Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What can I expect from...

Hello to all!

I am realtively new to AS and to this web site, which I am really enjoying! I have had 3 operations in the last 2 years. Both feet and then my neck. I had no signs of AS in my neck but degenerative disk disease. Had 3 disc implants and a fusion with plates and screws. NO HELP! I am in as much pain as I was then. Maybe even more since I now have a shoulder that is nearly frozen. No more surgery for me. Now my Dr is sending me to an Ortho that specializes in pain mgmt. I am so confused. I feel that there is no Dr that really understands me. My reumy says I have fibromyalgia too, just to add insult to injury! I still am working some 60 hrs a week which is very hard. I do have disability for which I am thankful that I had the sense to buy. I may need to use it soon. I take 2 indocin a day and paxil. The paxil seems to help me sleep. Anyway, I will continue to read on and learn!!

Thanks!

Diana

PS."GO DAWGS!"

Diana

Hello back at ya'

SOunds like you've been through heck with your neck. You said its not AS in your neck but rathr it is degenerative disc disease. What's the cause of the degenerative disc disease??? Is it the AS???

It is always difficult to hear that someone is not getting any relief. GLad the Paxil helps you sleep. Anything that helps someone with AS get some sleep is worth its weight in gold.

Glad to meet you.

 
stevec-they also serve who stand and wait

Hey Diana,

I'm sorry you are having such a struggle with the pain. I hate to hear that you had surgery and still have no releif.

I know what you mean about the doctors not understanding. To be honest I think they don't have the answers but they are too prideful to admit it. So they do surgery and pop you full of pills or just ship you off to the next specialist.

Try to hang in there and keep reading and getting information from the others. Take all the information you get to the doctors and hopefully the answers you need will soon follow.

Good luck,

Angie




Angie

I too live in a lot of pain all the time. I can't work any more. I can barely take care of my home & family. I feel lucky that I have a great doctor. I do a lot of my own research on many sites, I'll list some below. I take stuff I learn in with me and ask if we can try something I think might work. He's good enough to admit my own research helps him out. But I also try to approach it as a team effort and not that I think he isn't good enough. My doctor and I have both been concerned at the fast progress of my AS and RA. I started Kineret shots today. I'm trying to stay level headed but I can't help but hope it's my miracle to get me back on my feet.

Here's some web sites that might help out:

Arthritis Foundations : WWW.arthritis.org
American Autoimmune : www.aarda.org
Natl institure of arthritis &.... :www.nih.gov/niams
American Academy of Pain mgmt; www.aapainmanage.org
American Chronic Pain Assoc : www.theacpa.org (I like this one a lot)

Also try looking up RA Access, it sends me materials often.

Good luck. Maybe you'll find something that will help. If I hadn't researched myself, it would have taken a lot longer if ever to find out I had AS and not just RA.

Best Wishes
MissDebi

Hi! I havent been diagnosed yet with AS even tho i have hlab27positive, iritis, rdged ribs with only 1 cm expansion, bad knees lower back pain and hip, middle back pain, shoulder pain and neck pain. All this pain for years. I also have had neck surgeries, 2 of them, last one with bracket and screws. Like you i still have alot of pain in neck and my right shoulder hurts all the time with burning. I wonder if they didnt do something to my shoulder in surgery, maybe the way i was laying. Cause ever since then my shoulder has hurt. I am on bextra 20mg. and muscle relaxers at nite but still in lot of pain but stiffness is better. Hope you find something that helps you better.

take care>>>Connie

What kind of foot surgery did you have? My left foot is fused - - all those itty bitty bones between the ankle and the heel are now one big bone and my toes are pointing west while my arch/heel are pointing east, which makes it a real challenge to find shoes that fit halfway comfortably. My rheumy sent me to a foot doc to says I need surgery to break the chunk of bone and reset it with all foot parts going in the same direction - - as you can see I do not have a medical background, so these are not exactly technical terms

I have DDD in my lumbar spine, courtesy of AS, and my SIs are fused. Are you sure the DDD is NOT from AS? AS sometimes starts in the neck.

Sounds like you need to go to a pain management specialist, I don't think two Indocin a day will do it for most of us, and they obviously aren't doing it for you. Do you take any muscle relaxers? Sometimes the pain is from muscles in spasm. I take Soma at night, without it I wouldn't get more than two hours sleep at a stretch.

Cheryl

Dogs love it when you leave your clothes on the floor

Hi Diana,

Welcome to the KA family. I am sorry to hear about the surgeries...they didn't help. I had a Rheumy who did not do much but upset me and keep increasing the meds that were not working. I have been lucky that my GP is great. He has been learning about my problems.

I have a new Rheumy, who seems to be good...but then I have only seen him twice so far. The new Rheumy has run more bloodwork than the ex-Rheumy ever did in the 4 years that I went to him. The blood was sent to a specialized lab, who specialize in Immunology.

I hope that you will find a DR who will help you. Let us know how you are doing.

Take care and welcome again,

Lisa

KickAS is more than a support group...it is a family!

You know it sounds odd but I never asked the Neurosurgeon about the DDD being related to the AS. But, when I started with him and told him about the AS he did look rather bumfuddled. But that is the look that a lot of Drs give !! So now I live with the appliances. I had hernia surgery in August and because of the neck fusion the anes. could not put me under due to the neck fusion. So I am terrified of any more surgery! I hated being awake. I do know that eventually I will need hip replacement. The right hip is in bad shape. I am going to talk to the new rheumy about different meds after reading what others are trying!

Thanks for all the responses!

Diana

Diana

Hi!

I had several spurs in both feet. I am on my feet all day as a retail mgr for a grocery store. So, after years I had to do something. The Dr did a new procedure that cut a tendon in each foot. It took a year to get better tho. I had to wear casts on each foot because my arches collapsed. But now they never hurt at all!!

Diana

Diana

I have plantar fascitis, which is similar to bone spurs (like someone is driving a nail through my heel when I put weight on it) but since I've been on a new disease modifier this symptom has just about stopped bothering me - - it's very common with AS. My sister, however, had bone spurs and used to get injections in her heels I've had cortisone injected into my palm to straighten out my fingers and into my ankle but not my heel. I've also heard of a new treatment for bone spurs that is non invasive, using sound waves to dissolve them. Glad your heels are now pain free, one less body part to worry about

Cheryl

Dogs love it when you leave your clothes on the floor