Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New to the Community, Saying Hello!

So hi there, everyone!

(If I've chosen the completely wrong place to put this, someone please let me know)

Let's see how short I can make my story:

I had my first SI "episode" at 19. I spent the next year seeing a chiropractor with mild to moderate success. Pain came and went, all manner of stretching, chiropractic, massage, physio, exercise, and every pain killer/muscle relaxant out there was tried. But I was still relatively active and strong until about 3 years ago, when things started going downhill.

I had x-rays, and a CT scan, but since all my doctors refused to understand that when I said I had SI pain, I really had SI pain, almost all my diagnostic tests were done for my lumbar spine.

Two months ago (after 13 years of pain), I finally got an appointment with the pain clinic and after 2.5 hours, the nurse practitioner and the doctor both agreed that every symptom I had fit AS perfectly. So they've increased my dosage of Celebrex and I go for SI cortisone shots in 3 weeks. I'm scheduled for my blood tests to check on my HLA-B27 tomorrow morning.

I'm thrilled to have a possible explanation for my pain aside from "well, everyone has back pain and you just have to exercise and stretch more".

I'm terrified that this means that I will have my current level of pain and immobility for the rest of my life, or worse. I'm 32 but you'd think I'm 80 from the way I have to get myself off a couch.

And finally, I'm very nervous about my injections! They're x-ray guided, so at least I won't have to worry about any guestimating on the part of the doctor.

And that's mostly that! I'm looking forward to getting to know everyone and their stories. It's amazing how long a road it is for most people to get to a diagnosis.

Cheers!

Alice

Alice,

I'm glad you found us, but saddened that you you may have AS. Getting a correct diagnosis opens the door for proper treatment, so your future need not be dismal. I went through 15 years of being told that my pain was simply 'just' back problems that were somehow my fault. I knew that was bullsh*t. With diagnosis, I was put on Enbrel, which worked great for four years (like not having AS), until nerve damage made me have to stop it. The pain came back, but the no-starch diet has done wonders for me since I started it two years ago.

We're all different, so you'll have to find the treatments that are best for you. But just keep in mind that there are good possibilities toward having less pain and a better life. Please keep in touch and check out all the info on this site. I wish the best for you.

--Greg

i'm with greg in believing that you won't necessarily always be bad.

it you have flares like i do, you can get patched up. between a chiro that has largely done that, and doctors who have prescribed me the right combo of meds and supplements to feel good in between flares and something else for the flares, things are much more under control these days. not perfect, and always a moving target, but better.

and if its more chronic than flares, other drugs for that, as greg indicated.

Hello Alice,

Just thought I would pass along well greetings as well. I'm 31 and have been fighting this fight for the last 12 years. Good Luck!

as for the injections, i've had them twice.

first time didn't hurt a bit. second time did.

my new interventionalist said he doesn't even use sedation and his patients are fine. but that he uses very little medicine / solution.

he thinks it hurt so much the second time because they used more solution than he would. that would make sense because the right side is most inflamed and that hurt the most, would make sense that the extra fluid being injected was making things worse.

plus it was med students doing it with the doctor instructing. so that could be it too.

but they did offer me sedation and i turned it down because the first time with a different doctor didn't hurt at all.

so, either the doctor can do it relatively painfree like my first and third doctors.
or they will offer sedation. most likely.

anyway, the shots can be useful. were for me the first time (a year pain free in the SI). the second time just a few months.

Hello Alice,

Glad you found Kickas... I had the 80 year old feeling as well many times in my 20´s and early 30´s. Hopefully you can find a treatment that works well for the AS and afterwards you feel like a new person again... to me it felt like 2nd lease on life when I found what helped my AS.

Best to you and stick around, the people here are great for support and knowledge.

Tim

Thrilled/terrified: that sums it up completely, doesn't it? So good to have you hear and sorry you have this going on in your life! You can get so much support here. Please let us know how it goes, okay?
All best wishes for you,

Welcome Alice!! I am glad you found us but sorry you had the need.

I have been doing this many more years than I care to admit. 50+ I don't think you will always have the pain. There are just ups and downs along the way and you will learn more as you go as to how to deal with it.

One of the best things is coming here where there are great people to encourage you and understand you.

I have had the injections many times in the past and have reached a point of them not helping and now just get Radiofrequency Ablations. I hope they help you. They will probably give you something to help you relax.

Come back often. Let us know how you get along.

Blessings.
Possi

It sounds like your PM was the one to DX your AS. The injections can help a lot with the SI pain, but you need to be treated by a Rheumatologist to get the meds that might help prevent or decrease the flares. I was given Humira and It was like not having any problems at all. Celibrex can help some people, but there are much better meds. Also, AS can affect a lot more then just your back.

Take your time and read through all the information here, There is so much to learn and you will find some wonderful folks here to visit with. Feel free to ask lots of questions.

Dear Alice, Welcome and as everyone has said I am glad you found this site but I am sorry that you had too. I am still figuring out this stuff too but I want you to know that the folks on this site are AMAZING. When you are having good days you can tell them about it and they will celebrate with you. And when you are have some really crappy days you can tell them about that too and they understand more than anyone else can. When you have a question don't be afraid to ask. We are all in this together and we lean on each other for all kinds of reasons. There is a womans forum if you have personal female questions. You have to ask for access but it great. THe people on this site will very quickly become part of a new family that you will rely on and be here to help all the new ones that come later. And definitely get an appointment with a rheumatologist. I went to family doctors and 'specialists for spine' for 15 years before my Primary doctor sent me to my Rheumy. Two tests was all it took to get a diagnosis and validate that I wasn't crazy and that my pain was real. Good luck dear one. Please update us. We all care.