Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Getting Help??!!??!

Hi there, everyone. My name is Ronna. I am 25 years old, female, and I found out 2 years ago that I have AS. I am sure everyone says this, so it comes as no surprise to all of you to hear that I hate it and I am having trouble with it, in more ways than one. I am so glad that I found this site.

It started around 3 years ago, in my hips and lower back. There were some days I could barely walk, which was unfortunate because I worked at Tim Hortons at the time. I had trouble with stairs. I couldn't sleep at night. Not being the type to go to the doctors for every little thing, I pushed it back, and pushed it back, until one day where I was so bad my father in law insisted that I get help. My family doctor was shocked to find that the lower part of my spine was fused, and sent me for xrays asap, and to see a "Rheumy" (as I have seen on the site, and it is easier to spell!) It was then I found out, and my life just seems to have never been right since.

I have a pretty close group of great friends, and my husband and families are great. But, no one knows what this disease is. No one can really understand, as much as they want to. I don't even understand, and unfortunately, neither does the Rheum. who diagnosed me with it in the first place. They do not know exactly why I got it, and I am the first female patient of theirs of my age group. Not very encouraging.

The worse thing that I can say is that I don't feel that my doctor helped me enough at the start. I realize that I am a grown adult, but, sometimes when you are faced with stuff that has you baffled, and you are dealing with constant pain, you just aren't thinking right. I left the clinic after a long 2 hour session trying to understand what this disease was with this prescription for "Celebrex" They were to arrange a person from the Arthritis Society to come and help me. This was all I knew. I figured that this person from the Arthritis Society would help me, but, she wasnt very nice. She only came to my house once, gave me pamphlets that scared the heck out of me, told me to do deep breathing exercises so that my ribcage wouldn't fuse, and never came back. Later, I found that she is the only person from the society in this rather large area, and she is just busy. But, I was so disheartened. I was so confused. And no one told me that diet made a big difference. No one told me that I could take vitamins or other things to help. Like I said, I could have found that out for myself, sure, but, I didn't at first. If I had been told the day it happened to change the way I eat and so on, I would have. Worse than that, the Celebrex did nothing but make me irritable and sick to my stomach, so I was taken off of it. That last time I went to the Rheumy, I I was so sad, and sore and scared. I had thought they would be used to that, but, it seemed like I was just one more face, I just happened to be a younger face than they were used to. I got another prescription, for Naproxen, that I asked for myself because I had used the U.S. pill Aleve and it helped on the days I could barely walk. When the doctor handed me the prescription, he said they couldn't do much more to help, and if I wanted to, I can schedule another appointment, but I didn't need to. I said no thanks and left. On the way back, I told my friend who went with me that I never wanted to go back there again.

That was a year ago. I have since stopped using Naproxen as well, due to my stomach. I use Robaxacet when necessary, and sometimes I go through it like it is candy. My family doctor has since retired, and I have no family doctor. In the last few months, it has worsened, so, I have bit the bullet and called the doctor for an appointment.

To make a long story longer, I basically do not know what to say to my doctor. I thought someone could help. Since I found out about this, it has spread from just the hips and lower spine to halfway up the back, and my neck and shoulders too. And I don't know what I am doing wrong. I sleep, sit and walk the way the Arthritis Society pamphlet told me too. I try to exercise as much as I can. I like Yoga, and Step Exercising, and even light weight lifting. And I mean light, I use 1, 2 and 3 pound weights :)! I have been researching a lot on the web, and I have started taking Glucosamine Sulfate, Vitamin E, and I am trying to put more calcium in my diet. I also try to stay positive, I know my message probably doesnt sound that way, but I am just really angry about this! I need help managing this pain, and I do not know what to say to the doctor. I feel a bit let down by him, and I wonder if I will just leave feeling the same way again. I wanted to ask him about alternative medication I have tried and found helpful, but I do not know how to go about doing this.

I hope this message isn't too long that no one will read it. Any advice is good advice! Thanks for listening!

Welcome to KA Ronna...
I would encourage you to look through the site for some of the answers... There is a pain chart, the NSD info, the London Diet info and much more... Talk to the rheumy after you have gathered this info but I personally would be looking for a new doc... I would be asking around for a good family doc that I could trust and then get them to help me find a rheumy that is actually aware of AS specifically with women... ( Yes there are still docs that don't believe women get AS)
Just my feelings and I am sure you will hear from others here...
Once again WELCOME!!!!

Hi Ronna!!

I feel for you.. with all you have been through and are going through. The lady from Arthritis Society sounds unhelpful. You have come to the right place, you will get the real scoop on AS from here, and learn how to help yourself in all kinds of ways.

WELCOME!

********
Kristin

TODAY IS NOT A DRESS REHEARSAL!!

Dear Grinn:

Thanks for the advice! I was afraid for a moment that everyone would just think I was a big whiner! Nice picture by the way, it gave me a smile. I am trying to get a new family doctor now, but it is so hard. This area has a major doctor shortage problem. I can't believe that I cannot get one, considering the problems I have. I am not saying that I deserve tip top notch attention 24/7, but there are people who sneeze and run to their doctor, and I cant get in when I am stuck in a humpback position! Well, such is life. And you are right, many do not believe that women get this disease. I have also read many many times in books and website that they claim that women do not suffer with as bad of symptoms as men. I am sure you guys have trouble, but look out, I am women, see me sore!

Thanks for the nice welcome. You would not believe how much better I feel already. I am also checking out the site. This was my first time here, and I bookmarked it right away!

Ronna

Dear Kristen:

Thanks for replying. Like I was saying in reponse to Grininbearit, I was afraid that people would think I was just whining, and doing the whole poor me stuff. Believe me, I would find much better things to poor me about than this. The Arthritis Society lady wasnt very nice, that is true. I was rather disappointed. And, between her and the doctor, I think that was why I didnt go out and research it myself right away. I only heard the worse, such as a fused ribcage, and the possibility of being put into a wheelchair in five years, and I didnt want to learn anymore.

But, I guess I have grown up since then. And I will say, that I am lucky in one slight little way. With having something like this, you find you don't worry about the stuff that other people do. I have gray hairs, and I don't really care. I gain weight, I lose it, and so on, and I don't care. I figure if I got out of bed today, it is a good day.

Ronna

Dear Ronna:

Welcome to this great site. I hope that you will read through the AS Dietary Primer in the Medical Center section, and here is a handy link that can help: https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=starch.

We are all surprised at your story (and I think that I can speak even for many of the ladies here, too) because you were diagnosed so quickly! It is unfortunate that your condition is advancing so fast, but you can put the breaks on it and even turn back the clock a bit, hopefully.

Now you have a serious case of AS very young, and this can be a strong advantage in that you might achieve a lasting remission. The correct diagnosis does not guarantee proper treatment and you have asked what to do with your doctor. There is no sense in badgering him with the truth; he has no control over accepted practices even if they are harmful. It sounds like you have already learned that the drugs are bad...In my case, the NSAIDs accelerated my AS because of the intestinal damage they caused. I was unaware of the mechanism then, as was my doctor and yours is now. I fired all of my doctors years before finding kickas, and have generally been much better off without their "care." I cannot advise you about doctors--I'm great friends with some, but would never again consider using their services (for AS-related matters)...

I re-instituted my old regimens that included dietary restrictions and various other things and I avoided many sequelae. Today, except for the skeletal damage, I am pain-free and have been in near-total remission for 3 years, thanks to some of the information available right here (starting with Brian's asweb; the old version of this site).

May you do likewise,
John

Dear John:

Thank you for your sound advice! That is very nice of all of you to understand. I thought about what you said, and I guess you are right. I was lucky enough to get diagnosed earlier on in life. In a weird way, I just now realized that it was rather quick, but I have just felt like it has been forever. But, it hasn't. I still have the pain free past to remember, and the hopefully brighter future ahead.

You are also right about the Doctor. I did want to know the truth. I have recently gone nuts lately, reading a ton of information and trying to process it too quickly. I just learned about the gene that plays a factor in AS. I had thought for the longest time that it was my fault, and I did something to cause it. But, I was wrong, and I made myself feel terrible for nothing.

I will try to eat better, sleep more and stress less. I try to be hopeful, I really do. Unfortunately, I had a bit of a bad day today, it was very cold, I was working overtime, and I knew I was too tired for this get together I was supposed to go to. I felt so frustrated and sad that I couldn't go because my back hurt, and I was just miserable. But then, I got over it, and logged on to this site which I am loving more and more as I go through it.

Thank you, and thanks everyone. I am glad to be here. I also hope that I can help people too, instead of being the one asking for help all the time. :)

Ronna

Ronna,
Welcome to KickAs. Hope you can find some answers, some info, and a whole lot of friendship here. There are so many people here who will listen and offer encouragement. And I am sure there is not one person here who thinks you were whining. I am glad that you found this site....(I don't know what I would have done without it) I have learned more here than from my doctor. And don't ever think you are whining..... we call it venting lol. It is nice to be able to have this place to come to.... on bad days these KickAS friends will let you vent away.... And on good days you can offer encouragement to someone else who is venting that day. I hope you check out all the areas here. You will find alot. Welcome again, look forward to seeing more of your posts

ohhhh if only I could move like this... lol HUGS!!! Pam

Ronna,
I think almost everyone on this site can relate to what you are going through. It is very important for you to try to find a good family doctor as well as a Rheumy. You need them to help stop AS from doing any more damage to your spine and to give you some pain relief. One thing you will find is something that works for one person may not work for the next. You can go into the AS Pharmacy where you can do some reading on the different type of meds out there. Then hopefully you will find a rheumy willing to help you and you will have an idea of the medications he might be talking about.

As for support and answers about AS, their is nothing else in the world that comes close to this site. You will find so much information here. Don't be afraid to vent or ask any questions someone always seems to come up with a helpful answer. Good luck in finding a doctor that will listen and help you.
By the way where are you from?

Bev

There is a wonderful article, posted by Evelyn, about women and AS, I'll try to find it for you later today or tomorrow (in the throes of working on the house to put it on the market) but in fact the article states that while males usually have accelerated fusion, which can sometimes lead to some pain relief, women fuse later (sometimes not at all) but have all the pain of constant inflammation. I am always amazed that doctors don't advise on all the treatment choices, such as the DMARDS (disease modifying drugs). I was in a major flare for the past 5 years - - particularly last year when a ruptured disc led to months of teeth grinding pain, autoimmune disorders just love to overwhelm us after an illness or injury - - been on the NSAIDS off and on for the past 23 plus years - - had a mis DX of RA, wasn't DXed with AS until about 18 months ago - - then sulfasalazine, MTX, we did not get along at all!!!! I got to the point where I couldn't walk without a cane, couldn't stand for very long, or walk, or sit, or even lie down. Finally in October was put on a new DMARD, Arava and after about 6 weeks went into complete remission!!!! I recently lost my husband (March 11th) and if I was physically in the same shape I had been I could not have coped at all with my grief and with this illness, but at least I am able to physically cope with everything that needs to be done to get me through this part of my life. And yes, women may not get AS as frequently as men but they do get something called spondylarthropy, which essentially is pain without fusion, and it can be every bit as debilitating from a pain standpoint.

Glad to see you here at the site, it truly is such a wonderful place.

Cheryl


Dogs know the meaning of faithfulness