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#460824 01/20/12 07:47 PM
Joined: Sep 2011
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I've been diagnosed with AS.. I'm in desperation mode at this time. I graduated college, and want to work very much. I'm currently on Enbrel, Vicodin, Flexeril, and anti inflammatory meds. This is just not cutting it for my pain levels. Every single day the muscles in my entire back is locked up from the bottom up. I'm living on a twisted/rotated pelvis, and have a feeling of crookedness all the time. I am feeling so trapped in my body at this point and feeling such pain that its been triggering anxiety attacks. I am tempted to go to a job fair, which will probably lead to a good job, But trying to just function for like 1 or 2 hours is ridiculously hard at this point. I'm in too much pain to even have a desire to call up my friends and hang out. I'm in the process for applying for disability, but since I'm only 25 and haven't have a long working history, I'd be receiving near the bear minimum of money from the government.

My insurance is about to be expiring in October because I have been under my fathers insurance, and I'm turning 26. You can only be under your parents insurance until 25. The pressure is really on. I can't bear to go without any medicine for relief at this point.

I was told by my lawyer that since I present write well, speak well, and am educated, it will make the case harder for disability money. But I'm severely limited in what I can do. I really feel that I probably wouldn't be able to hold a full time job, even under the best of circumstances (one that allows me to alternate between exercise and sitting) at this point. I feel like I have periods of productivity, but due to the randomness of pain levels, I am unable to stick to a strict schedule.

I've been told the disability process will in all likelihood take around 2 years, and even then I'm not guaranteed to win my case.

If you were in my situation what would you do? I could really use some good advice to ease my nerves. If you have been in this situation before, please get back to me...

Much love to all of you out there.

Brian

Joined: Feb 2011
Posts: 1,968
Pea Offline
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Get your Dr. to put you on a Medrol pack immediately to get you out of your flare. That is the first step.

Panic attack's are no joke either. I just went through all of that as my pain got out of control. My pain specialist happens to be a Psychiatrist who specialises in pain so she got me on something fast for the panic and sleep. Rheumatologist jumped on it and gave me a Medrol pack and is keeping me on 5mg.s of Prednisone daily. This got me out of the flare and panic fast. Do you have a pain specialist? Don't wait on this any longer. It can escalate very very fast.

You will have to see your Rheumatologist to find a better comprehensive plan for you. The learning curve for A.S. is huge. We are here to shorten it for you.

Last edited by Pea; 01/20/12 07:57 PM. Reason: Wanted to add more to content

Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
Joined: Sep 2001
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AS Czar
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Hi, Brian:

Quote:


If you were in my situation what would you do? I could really use some good advice to ease my nerves. If you have been in this situation before, please get back to me...


I was in Your situation and I made the decision to get myself well enough to continue and I had a wonderful career and never regretted the efforts required to kick my AS into low gear.

You will not find any drug, any doctor, any prayer that can do this for You; it comes from within and taking control.

HEALTH,
John

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Thank you very much for the kind advice. I've never even heard of a Medrol pack.

I saw a pain specialist when I was suffering, but without the diagnosis years ago. He refused to offer me a type of painkilling medication. He gave me one vicodin subscription 1 time, but only a weeks worth.

I'm due back to see my Rheumatologist early next month. This was my trial run for 3 months on Enbrel. It hasn't done anything at all. I will bring it up to him.

Also, I forgot to ask.. would this device benefit people with AS? Its a Medtronic pain blocking device. They have been out for a while, but this is the latest version.

http://abclocal.go.com/wls/story?section=news/health&id=8512014

Joined: Feb 2010
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Talk to your GP. If he/she can refer you to a different pain specialist, try that. It helps if your GP or Rheumy writes a letter detailing what they have been doing for you. The fact that you have been taking Enbrel, changes the situation and they might take you more seriously.


Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,
Joined: Feb 2011
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Pea Offline
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A Medrol pack is a special dosing of Methylprednisolone. High doses to start with a daily taper. This work's great for bad flares for almost anything auto-immune. My sister with Lupus uses it too. I am also on Remicade and Sulphasalazine.

Start your disability as soon as you can. I don't know where you live. In the states, a lot of use Allsup to represent us. They have a 98% success rate. They will also help you with Medicade if you need it. Sound's like you do. They are a great help. Request copies of everything medically that you have done. Keep your lab's, M.R.I.s, CT scan's and Medication List w/changes with you. It is better to plan ahead then to wait. You can think clearer then when the pain hit's.


Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
Joined: Jan 2010
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I think the first thing I'd do would be head back to rheumatologist as soon as possible and say "its not working". You should be getting a lot better control than you are, and its not just about pain management and more pain meds - its about getting the underlying condition controlled much better. If the enbrel hasn't done anything, then you need to try something else. A medrol pack to knock things back a bit would probably be a good start and give you some real relief. Would also get you through the job fair really well in all probability.

If disability does take so long to go through then I guess you could start the application process, but I really wonder if you might end up regretting it if you do get put on different meds that make a big difference. Its a really hard call, but definitely talk over treatment with your rheumie as soon as you possibly can.

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All the advice given so far is most important but I must ask you if you have started the NSD yet? and if not I would give it a shot. It might take a few weeks to kick in but it's worth a try. Sorry about your condition and wish you wellness soon! hugss

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Master_AS_Kicker
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If the meds aren't working, you may want to consider some other treatments that have proven effective for so many: the low- and no-starch diets. There's a lot of info on those in this site.


AS symptoms started 1991. Official dx in 2006 with HLA-B27+, fused SIJ, bone spurs in back, extreme rib/hip pain, and other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage (MS) from it. Getting good results with no-starch diet since 2011.
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Very_Addicted_to_AS_Kickin
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taking a physical approach (in addition to the drug approach) has helped me a lot.

was in physical therapy for several years at the beginning (after 18 months of no help, going from doctor to doctor until one sent me to PT). she did a lot of "soft tissue work" for me, traction for my neck, counterstrain to relax the muscles as stretching was just making them spasm more. but the best thing she did for me was ultrasound.

turns out i had a bunch of trigger points in my back and that was one thing the ultrasound was helping. then the PT sent me to a physiatrist (doctor of physical / rehab med). she started giving me triggerpoint injections in my upper back, so helpful. put me on zanaflex, so helpful. and injected my SI joint with cortisone, so helpful.

after the physiatrist did those things for me for ~ 1 year and i kept seeing the PT, i was in much better shape.

i was also swimming during that time.

then i had to move. was managing on my own from 2003-2006.

then a big flare and since then in and out of PT, to orthopedists when i've needed to, especially for my hands (tore a ligament at one point).

fall 2009, my upper back got a lot worse. the PT and physiatrist up here (not as good as from where i moved) couldn't help, nor could the GP or rheumy. it subsided after 6 months. when it hit again in the fall of 2010, i tried a new route. my chiro dx'ed the problem within 30 seconds and resolved the pain within another 30 seconds. turns out i had a rib stuck under my shoulder blade that he had to mobilize (just some gentle pressure). anyway, i've worked with him ever since, twice a week. he does a lot of what the first PT did for me. chiro's not for everyone, and not every chiro is right. and if i had found another good manual PT, that's probably where i'd have ended up. but we do what we gotta do to feel better.

so the short is, i'd see about a good manual PT.

and the pred isn't a bad idea short term to get you out of this flare.

but mostly, i'd go back to the rheumy and let the rheumy know how bad you are doing and that you need more help.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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