Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Need help?

I hear you pain241 - I just found KA about 5 months ago - I have had AS for 38 years - I have gotten more help here than anywhere or anyone ever!

Brian

Hey Pain,

Dave is right about the indomethacin or indocin was the first nsaid they gave me to try and about six weeks of it was all my stomach and gastro system could take, but I never really got any pain relief from it. From there we tried clinorol and a few more until we got to naprosyn. I didn't feel much difference taking the naprosyn but managed to take it for about four years before my gastro system said no more of this one either. At age 28 I had already lost over an inch of chest expansion and was getting steroid shots in my hips. The doctor who gave me my first cortisone shot in my left hip said this is going to hurt a bit and starting pushing the needle in then would pull it back a bit to change the angle and push it back in to get the medicine in a different spot. He said he was surprised how calm I was because most patients would tense up and try moving away. I told him the needle and meds he was putting in did not hurt no where as close to as bad as my hip was already hurting to keep going because it was easing the pain some. He had told me after the shot and reviewing the xrays I would most likely need a hip replacement in ten years or so, but here 20 years later I am making it on my own hip. It pops and clicks a lot but as long as it still moves I won't get it replaced.

Brent

Yes, I am finding out more here than anywhere else. Seems like everyone on here is friendly, helpful and understands the pain. I can not imagine having AS for 38 years, Brian you must know pain very well. I hate to post in one way, because I do not know for sure what it is yet. Also, most everything I read on here makes what I am going through seem like nothing. I know I have no one to talk to about this, and on here everyone seems to know where I am coming from. I have got to the point that I do not tell folks at work or other friends whats going on because of the "But you look so well" problem or "Its all in your mind, just suck it up and go on". I really do appreciate everyones help, and I hope that in someway I can help someone else one day. I imagine that many of you have many friends on here, and hopefully I will to later, because it sure does help to talk about it. With me taking the max dosage of Tylenol Arthritis on top of the max dosage of Indocin I am afraid that my stomach will let me know soon or my liver tests will one. I may back off on the Tylenol and start taking Vicodin, but I hate it and I only have the one with Tylenol in it, so it may not help much. I am going to ask for Vicodin without Tylenol next time, but I only have this prescription because of a recent surgery that I had, so I do not have many left. Sorry for rambling, and I hope everyone has a Great Thanksgiving.
Ron

Ron,

You are doing just fine posting here and I have to agree you will find some of the friendliest helpful people you could ever hope to meet on this site. A lot of us have gone through and still go through the you look so well and it is all in your head stuff for years. Most normal people think because they can not see any physical problems you are fine, but let one of those people get a little kink in their back from bending over or picking something up and they will whine and cry for a month. They soon forget how it feels when they heal up and the pain goes away. Our pain stays and most of us don't get to enjoy pain free days lik the norml folks.

By coming here you are around people who understand how you feel and we don't forget what each of us go through. I think the hardest for me has been with family members not understanding, because some friends come and go but your family is always there. I usually do not complain much and sort of bite my tongue if I am having a real bad day. Part of the family can tell when I am having a bad day and kind of let me be until its over. Then I can come here to talk about stuff and feel a little better.

Be careful with the Tylenol as it is not good on the kidneys if you take to much. You might want to talk to the doctor about a prescription for prevacid or something in that line of drug to help protect your stomach. They can write a prescription for Vicodin with less Tylenol if you ask for it. My vicodin is 5/325 instead of the 5/500 and the higher doses can be written the same way 7.5/325 or 10/325.

Have a happy thanksgiving,
Brent

Hi Ron and welcome to KA. Don't worry about posting here when you do not have a concrete diagnosis of AS, many of us do not have a diagnosis of AS, yet, me included.

Please be careful with all the NSAID's and meds they are filling you with as they are very harmful to your liver and other organs and very harmful for your stomach and intestines. Also, please note that you will not always feel symptoms of your liver etc being harmed by the NSAIDs and the meds, the 'potential' damage is going on right now and you won't feel a thing! Make sure you are having regular liver function blood tests [LFT's]...I have them every 3 months.

Have you looked at the diet site on KA? It is very helpful. I started the NSD diet Sept 06 and it has worked very well for me. I started the NSD and stopped the NSAID's the same day...cold turkey...liver problems!

I suggest to you that you keep reading here on the site and elsewhere. It is very important, IMHO, to get as much knowledge as possible re AS. The more knowledge we have the more in control we can be with our own medical situation. Keep copies of all your tests, ask the doc to give you a copy, keep a file, and look up your tests on the net so you can become knowledgeable with what they mean.

Have fun on your vacation, and YES swim! it is great for AS.

Cheers,
Rita

James, 12, Adrian, 10, Elisabeth, 4, my babies!

Rita thanks for the information, and I have saw posts with the NSD in it but I had no idea it was a diet? I will check into this if I can find it on the site. I need a change of eating habits right now. I have tried fasting before, tried vegan diet, and a few others but never heard of NSD. I will look into that and thanks for the help.

To everyone, Thanks for making me feel like I am at home here, everyone is great.
Ron

Hi Ron. The NSD has its own forum. If you look on the main index, scroll down a bit, you will see TREATMENT, DRUGS AND ALTERNATIVES, then under that "NSD and diet-related". There is a huge amount of information and tips.

By the way, NSD stands for No-Starch Diet....

Cheers,
Rita

James, 12, Adrian, 10, Elisabeth, 4, my babies!

Update from the Florida trip that we just got back from. The Indocin SR seems to be helping for sure now, no doubt in my mind. We spent 3 days swimming with the manatee's and I had much more physical activity than I have had lately and the medicine really helped. All the water activity and exercise helped also, did have pain for sure, but all the kicking with the fins on really got the SI pain flared up, but all in all I was happy that we went. I have found that doing my back exercises in the morning also helps, it is painful doing them but it does help with the pain levels. I go back to the rheumy on Wednesday and I am looking forward to his treatment plan and to see if he wants to dx me with something? Have no idea of what to expect, but I do want to know what he thinks it is, he did tell me that he might want to do an MRI of the SI joints if the xray did not show up anything so that might be next. I am pleased so far with the medicine and I do take it with food, water and also take the stomach medicine with it. Thanks for all the positive comments and I plan to visit here a lot in the future.
Thanks
Ron