First on the agenda is getting you on meds other than pain meds. Taking nsaids or biological will allow you to reduce your narcotic intake dramatically. The net effect on your kidneys and liver will be less than the high doses of percocets otherwise required. Taking narcotics in pill form will also result in higher doses for less effect than might be possible with a patch of duragesic or butrans. For some reason butrans patches are in scarce supply right now so duragesic might be a better choice. Since being on a patch I have almost completely eliminated the use of percocet.

I agree with Chapps. You definately need NSAID - can't believe your doctor has not perscribed them for you. You need to see a rheumatologist who can test you for AS or other types of arthritis. I have been on NSAID for about a year and they make a big difference. Recently started on a biologic and boy are they great. Totally free of pain now. Very expensive if your insurance doesn't cover them however. You will need to take control and insist your health provider start addressing these issues for you. If you do have AS or something similiar, percocet will do little for you. Goodluck.

Why aren't you taking an anti-inflammatory?!?!?!?!? Percocet is doing NOTHING for you. If you're worried about liver damage, drop the percocet and take an anti-inflammatory. At this point you probably need a cocktail of meds: Steroids (prednisone - maybe even a steroid shot), NSAIDs, muscle relaxers and an antidepressant like Cymbalta. Once the chronic inflammation is suppressed you can go on a biologic to keep it suppressed. You are seriously NOT getting appropriate medical help. I'm afraid of the damage that has already occurred due to lack of treatment. If you won't get help for yourself, find a medical advocate (a friend or relative) who will educate themselves about your disease and drag you to the appropriate doctors.

If this is how bad you are, I'd run, not walk to my rheumatologist's office and get started on one of the biologics. It may take one or two stabs at different ones to get what works for you, but you could have a chance at a semi-normal life. Are you not even taking NSAIDs? Just covering up the pain won't work. You need an anti-inflammatory (NSAID) and I'd consider the biologics. No sense in suffering - you can take control of this.

The first thing - get to a rheumatologist...Each case of AS can be vastly different. The important thing to remember with AS is that this is a disease that does serious damage to your body with inflammation.  Treating the inflammation is the very most important thing ??“ pain meds can really undermine one???s long term prognosis by covering up the damage being done by the inflammation.  A good rheumatologist will test and track the disease and understand when to ramp up to stronger drugs - The typical track is anti-inflammitories, steriods, disease modifing drugs, cemo drugs and then TNF blockers.  I have been through all of them, typically treatment is more agressive today than when I started out (late 1970's) - I haved lived through the type of pain you are descirbing and in my sincere and 35+ year experinced opinon would suggest that you may need to ramp up to TNF blockers NOW.  A am not trying to scare you, but AS can premanently cripple you to extremes I will spare description in a very short time.  I spent over two decades dealing with serious pain - I spent many years trying to treat AS wholistically, then a decade or so using the drgs availbale at the time with minimal success, in 2001 I went on Remicade (TNF) and it not only gave me my life back, but saved my life.  Please, do not wait one more day to get yourself to a rheumatologist.  You have my very best wishes.   Good luck.

Oh Abby you sound exactly as i was just before i got diagnosed... I couldnt remember sneezing or coughing for the past 10 years without being in severe pain and walking across the room was a massive chore!  Dont be afraid of the drugs, if it gives you quality time with your family it has to be worth it surely? I'm fused through and through its probably too late for me to stop the fusion, but i'd say take the pain killers they offer you and enjoy the quality of life you have with your kids xx

I been on NSAID first Declofenic now Naproxen, for about 2 Years now, sadly not stopped this spreading too my legs, and nerve damage to my hands, none the less I am sure they do some good, my bowels are healthier if nothing else, I see my specialist on 26th this month

It is a long process, but eventually the right specialist will see you and get you on the road

God BlessTerence

I agree you do need an anti-inflammatory. Percocet has Tylenol which is MUCH harsher on your liver than Ibuprofen. Plain Oxycone and Ibuprofen would be a much better bet. I would take them both right now, unless you have Liver cirrhosis or disease. It's nice to hear so many people have such good results without taking any pain meds, I however cannot function and will break down emotionally with the constant pain. I don't take it all the time, but on my days off I need a break from eveything including the pain. I will tell you I need a lot less Narcs as long as I take the 600mg of Ibuprofen three times daily consistently. Once you've had a few days of Ibuprofen OR Naproxen, start stretching every hour or so while your awake, and increase to walking, etc. Inactivity makes it much worse. And remember, you're not alone. ((hugs))

Abby,  I am so sorry you are suffering so badly.   You should not be this bad - you need medical attention from someone.  I mean, I would even consider going to the ER at this point if you cant even get out of bed.  You need to take care of you, and then your babies.   Please reach out to a medical professional - you need to take next steps at this point.   It is "normal" to be in pain when you have a flare or even daily pain with AS  - but your case sure sounds extreme.   I hope you find relief fast!!

Hi Abby: You say you can hardly walk, where is that pain?  Is it in your feet, legs??? I have the same issue right now and have just scheduled an appt. With a Othro Specialist of the feet.  I can't wait to see him, I have had pain in my feet for about 1 1/2 years now and have finally gotten one of my many doctors to listen to me.

If you have ankylosing spondylitis, the number one interventions are anti-inflammatory medications or biologics.  Many many many a/s sufferers have takine NSAIDs and it has significantly improved their lives.  If it's really bad, get on a VERY short-term course a steriod like prednisone.  But break the inflammation cycle. Analgesics by themselves are the second step, not the first.

Some medicain makes things worese, what works for some does't work for others.  Where is your pain.  You maybe in a flare up right now, not sure only you would know that. Are you taking something for inflammation?  I hear inflammation is what makes the pain,  I'm at the end of my flare up and its hell, its that huge dragging, that I can't handle, I still don't understand what it is but its big, its eats your soul and makes it harder to handle the pain and anything else in life.

Like Deana says, maybe you need to consider a biologic medication that can help ALTER the disease process for you.  Do you take any NSAID medication (Naproxen, Ibuprophen etc)  They can help reduce the inflammation which causes so much pain, they also help reduce the instances of fusion, according to more recent studies.
Have you a pain specialist?  Doctors that specialize in pain know alot about current medications, therapies and combinations of such that may help you to become more comfortable, because just straight narcotic pain medications may not be enough.  I encourage you to seek out a pain specialist or a chronic pain clinic if you are not already attending one.
Take care, gentle hugs

HUMIRA is the only thing that helped me when it comes to medication. Been taking it 5 yrs with great success.  I no longer need pain pills.  Exercise is also very important.  Find what works for you.  Light cardio, walking, light stretching.

Hi Abby. Hopefully you have improved since you posted your original question, but I just wanted to say to never give up hope because you will find a way to improve your condition & get into a maintenance program that suits you. The thing is that this disease named AS effects every sufferer differently, there may be similar symptoms but results can range from minor pain to extreme pain. I myself remember the time I was in chronic pain & stiffness as you described every single day for neary three years. My chilren were aged 12,10,8 & 6 when I was first dignosed and between them they would help there Daddy get dressed & put my socks and shoes on. I would choose to allow them to hug me even though I knew that I would suffer much pain. A sense of humour is paramount as is an understanding partner or spouse. I remember when my wife would need to lead me up the stairs in our home and I would follow behind with my hands on her shoulders as support. If I sneezed or laughed I would be in extreme pain for a while. I hope and pray that you find peace & release so that you will eventually come through the other side and feel well again like I did. Bless you lots, Ray.