Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New diagnosis

Ive had intermittent back pain and received chiropractic care for years, within the last year I developed new symptoms; joint pain in fingers, wrists, ankles, jaw. I called my ortho and he referred me to a Rheumatologist, my blood work came back positive for the HLAB-27 gene. I am in my last semester of nursing school and am struggling with the uncertainty of progression, and trying to find good ways to cope with pain, fatigue, and trying to keep a positive attitude. I try to eat well, (but havent had much of an appetite lately),exercise, and am taking meloxicam and recently started sulfasalazin (my Dr. recommended methotrexate, but I wasnt comfortable with that just yet). I try to talk to family and friends but they don't know what to say. . . How do those with physically demanding jobs get thought the day? Any helpful advice in regards to that, or any advice having to do with AS would be much appreciated.

Thanks
-Carrie

honestly i wish i knew.

i just plugged away one day at a time. in pain much of that time.

early on i was in PT each week for like 3 years. triggerpoint injections was helping my upper back. a muscle relaxant helped greatly. sometimes i stood on ice packs, always on a matt of some kind. i have a very good (for me) office chair (swopper chair). i do have an office, so can lay on the floor, on ice. have a heating pad in my office that i can plug in; used to just have a microwaveable hot pack, but the heating pad is more convenient. i'm lucky i have a lab freezer filled with ice packs. it is a challenge though. sometimes i can't wait til the end of the day, to come home and crash into the recliner with a heating pad on my back and an ice pack under my butt, my current position. other days its not so bad, if i can get out for a short walk, etc. the other day though, had to stand in the cold room for an hour and a half. had a coat on, but still, it was a challenge. this week must do it again, this time i'll take a matt with me, but its a collaboration at a nearby university, so its a challenge to take everything i need over there. its only when i go somewhere like that that i realize how well i have my workplace set up. for me, the biggest challenge is the often long long hours, and last minute deadlines often thrust at me by my department head. if i'm having a good day, the last minute deadline isn't as big of a deal, but if its a sick day, then my body just can't take it.

i wish you luck figuring it out for yourself. it can be a struggle at times, but one day at a time.

Thanks for your reply. Im trying to keep myself together but it's proved more challenging as of late, Ive been feeling kind of alone in this so I thought it was time to reach out to others in a support group.

i probably should have added, this was all prior to being diagnosed. now that i finally have a dx, hoping i'll get on a drug that allows me to function much better without so much effort. hope the same for you.

Welcome to KA Carrie! I would have a tough time being on my feet a lot. Do you want to work in a hospital? I think that would be difficult for me. I would probably try to work in a physician's office. I have AS throughout my body. Every joint. My legs would not like that much walking. Is your AS confined to your back? Have you been sent to physical therapy? An AS physical therapy program definitely helps. It keeps me going.

Craig

Welcome here Carrie! Congrats on getting to the last part of school. Hang in here with us and you'll get lots of good ideas on how to deal with spondy issues.

Rest, exercise, good nutrition, meds... you'll get the hang of it.

Peace

Hi Carrie,
Just wanted to say hi and hang in there! After diagnosis and the right medication I improved significantly and have worked as a special needs EA with very demanding children for the last 10 years - 4 days a week. Before I was diagnosed I was struggling to walk most afternoons. Try to stay positive because there is lots of help out there for you!
Kind regards Carrie, and welcome!
Debra.

Thanks! Farinelli, My back, neck, left ankle, fingers (mostly pip joints), wrists, This is the worst its been. Hopefully the sulfasalazin will work. I want to work in the hospital in the ER, I dont know how practical that would be if flares continue like this, no one is really hiring new grads in my area at the moment (because of the economy) so I have some time to figure it out.

Hi Carrie!!

Welcome!! As a fellow member who works in health care (med tech in lab) I felt I would assure you that we can function in that realm. I wasn't diagnosed till almost 2 yrs ago. Had many issues with my feet and that got me a referral to rheumatology after 2 podiatrists and an orthopedic surgeon couldn't help me. This netted me a couple of foot surgeries along the way for plantar fasciitis.

I have worried on numerous occasions that I cannot continue to work such a high-foot-abuse-job. Off meds, I barely could keep walking through my shift and could think of little else but the pain, often limping badly. On meds, I get through the night. But I get home and my hip hurts, my SI hurts, sometimes my hands hurt, but my feet scream. I walk like a duck and can't wait to get shoes off and sit down for an extended period of time. Barely get this assault on the feet feeling better when it's time to go to work again. My weekend is for healing, not for much of activity that involves walking/standing, etc.

During the 10 yrs I spent before diagnosis, I went through a grueling year in lab school and have worked 6 yrs at my med tech job. Rheumy took me through several NSAIDS, none of which worked, some steroids which worked beautifully and then diagnosed inflammatory arthritis, but said AS would probably declare itself in time. He put me on SSZ, which didn't work at doses up to 4gm/day. So then it was MTX at 15mg/wk, which I tolerated very well. It helped immensely, but didn't give me enough ummph, imo. He bumped the dose to 20 mg/wk and my hair started falling out, but no added positive effects. I dropped the dose back to 15/wk before my next appt. Told him of this when I was at my last appt and he said it was time to try Remicade. I've had 1 dose, so no effect yet, but I'm hopeful.

During last winter, I managed to pick up a nasty sinus infection that just wouldn't let go. Everytime I was on abx, I had to stop the MTX. From beginning of Dec to mid Feb, I took 2-3 doses, not even consecutive. Asked rheumy if I just didn't take any till spring, if I could get well. He agreed. What a horrible time off meds...A night at work was excruciating. I knew then that the MTX was working well. My narcotics kept running out before the refill was due. I asked the primary care doc to increase the number and refill early and he refused, saying I could have a referral to pain management. AUGGHHHHH! This is a different topic though--it did help.

During this off-meds-time last winter, I went to manager in Feb and asked if she could assign me to lower traffic stations (I work in chemistry section of a busy hospital/reference laboratory) for about 6 weeks till I was able to get on treatments again. Fortunately, and since I had been there over 5 yrs, she agreed. After 6 weeks, I started back on the MTX and in 4 weeks, I was able to get back gradually to full duty. She also had me apply for FMLA, which will help me continue to keep employed...protects my job for covered absences. You might check into that after you finish school and get a job. Have to be employed full time for a year to apply. Even on the MTX, there is a lot of pain, still, but most of it is controlled by narcotics at this point. No drowsiness at all from them. They allow me to continue to work. Hoping remicade allows me to cut back on the narc use.

As is typical for hospitals, the lab has concrete floors, with tile. In chemistry, only a couple of stations allow extended amounts of sitting. We have 8-9 employees on 2nd shift that cover 13 instruments and handle 5-6K tubes every evening. So it's busy most of the time. Make sure you have good cushy shoes with good arch support. If you have a podiatrist, it's a good start. If not, visit a NewBalance store near you and ask for their cushiest shoe and cushiest insole. If another shoe brand fits you better, you should find the cushiest insole you can find....NOT Dr. Scholl, if you can avoid. Another insert that is recommended is the Powerstep (google it).

Again, welcome. And welcome to the allied medical field. I'm 53 now and this is a 2nd career for me. Wish I would have done it out of high school....but things were different then. Sorry this was so long, just wanted to answer completely as you are another allied health person.

Thanks for giving a complete answer. I've been interested in Lab Tech as a career but I get a lot of people telling me about how much they are on their feet and I get discouraged. I would love to be able to have a decent career to support myself and my kids.