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#276667 - 11/10/16 11:08 PM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]  
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MikeS15 Offline
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Hi there, this is my first post. Im a 22 year old college student who was diagnosed with Ankylosing Spondylitis 4 years ago. first two years were a breeze compared to now, i was on indomethican, Diclofenac, but they caused my stomach to bleed, so NSAIDs are not really an option. two years ago my rheumatologist prescribed me Humira 40 ml every 2 weeks & norco 5/325, and last year norco 10/325. at the beginning of this year we both agreed that i was taking too much acetaminophen, and i told him im a little self conscious taking out a big bottle of pills at work and school, so he prescribed me oxycodone ER 30mg , 1 pill every twelve hours and upped my humira to once a week. For 9 months i felt like i was normal again, i could actually sleep through the night for the first time in years.

but ever since the fall semester started, its been a bit of a nightmare managing my pain levels. I have a 30 minute commute, and then have three 75 minute lectures back to back, and another 30 minute commute home, almost 4 hours of sitting in hard plastic desks hunched over taking notes. i have a 15 min gap between classes, but not even 5-10 mins into class i have to constantly shift my body because of severe pain. And then theres the hours upon hours of studying, homework papers, etc. im going to see my rheumatologist in 2 weeks, but ive been sick as a dog with acute bronchitis which i caught at school, so i went to minute clinic at cvs last sunday and got on an antibiotic. I cant even describe the constant aching pain im enduring right now, and what may be worse is the fatigue/malaise, i usually have some fatigue, but now it feels like i need to sleep all day, i wake up tired and achey, and stay that way throughout the day, and both symptoms only get worse as the day goes on.

I am extremely hesitant to ask my dr if i need a medication change. I know im very young for opiates, but i cant imagine being able to continue school without them. i dont enjoy taking them, but i enjoy the relief i get if that makes any sense. And with the pain medication im on now, i have to take a dose every 12 hours regardless or else i will feel like hell, and my dr told me that its dangerous to miss doses because my body has a tolerance and that i can get sick if i do. I just feel like im too young to have to sit at home everyday with a heating pad just to feel comfortable, this has caused me to have almost no social life, im just to tired to go out and do things with my friends for extended periods of time. once and a while ill go out to dinner with a friend, but thats about it. I have been doing a little research and have found on a few sites that its quite common for someone who suffers from chronic pain to have an extended release medication and an instant release medication for breakthrough pain, the er meds are still take around the clock and the ir meds are takes as needed.

Should i ask my Dr for an increase in my extended release medication? or should i ask for an instant release mediation to pair with the meds im currently taking? Should i consider changing biologics? any advice would be greatly appreciated, and I think it would do me some good to hear from someone going through something similar so i dont feel so isolated. you can try and talk to friends and family but they just dont understand. Im just frustrated, and tired of feeling this lousy.

#276675 - 11/11/16 05:48 PM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]  
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SouthernMoss Offline
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MS
Hi Mike. You've added you question to a 92-page thread of symptoms and it will likely be overlooked by many. Why don't you copy and paste it into a new topic where you will get more responses and will be easier to follow? smile


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
#278268 - 06/17/17 07:03 AM Re: Spondylitis Symptoms - List Your Symptoms Here [Re: fall_of_moonbeams]  
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Hard to take full deep breaths, feels like someone's grabbing my spine and ripping it out. Back is 8-10/10 pain. On 8 zanaflex a day, 5 prednisone on a taper, celbrex once a day , and tramadol as needed don't help much


Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed
#278640 - 07/26/17 01:40 AM Re: Spondylitis Symptoms - List Your Symptoms Here [Re: fall_of_moonbeams]  
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Main symptoms:
* pain in back (around pelvis, spine, ribs, and shoulder blades - mostly on the left side), SI/hip/butt (mostly on left side), legs (quadricep and calves), forearms/hands (both sides)
* lots of crackling/popping in joints
* extreme fatigue
* dry, red eyes
* brain fog
* constipation and diarrhea, alternating

I also have (will have?) Hashimoto's thyroiditis, based on blood antibody tests. Thyroid levels are normal as of now, so just monitoring it until hormone supplements are required.

I'm in my early 30s, HLA27B negative... both my dad and sister have AS (they are also HLA27B negative). Blood tests for inflammatory markers always come back negative. I don't have radiologic evidence of any problems as of 6 months ago, but symptoms have been ongoing for 8+ years.

I've tried various NSAIDs and sulfasalazine, but developed a sulfa sensitivity so had to quit that. Also had bad side effects from indomethacin (though it helped with the pain more than naproxen, Celebrex). Next step is a biologic, hopefully.

#278777 - 08/16/17 09:25 PM Re: Spondylitis Symptoms - List Your Symptoms Here [Re: mtsargent]  
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#278778 - 08/16/17 09:26 PM Re: Spondylitis Symptoms - List Your Symptoms Here [Re: mtsargent]  
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apple012345 Offline
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The uncomfortable leg sensations start or become worse when you're sitting, lying down, or trying to relax.

Last edited by apple012345; 08/16/17 09:27 PM.
#278881 - 08/30/17 10:46 PM Re: Spondylitis Symptoms - List Your Symptoms Here [Re: fall_of_moonbeams]  
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#278930 - 09/06/17 05:31 PM Re: Spondylitis Symptoms - List Your Symptoms Here [Re: fall_of_moonbeams]  
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Amymb Offline
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Went to a Urogynocologist today, lovely haha. I have had on and off again urge incontinence since my twenties (before kids). Tried different meds over the years for overactive bladder-didn't help. Today's specialist discovered I have urine retention too. Suggested I go to a PT specialist so I can learn to relax bladder muscles as they are tight and spastic. If that doesn't work we will move to interstim (neurostimulator implant). Anyone else dealt with this? Could it be related to Ankylosing Spondylitis? (MS ruled out with MRI's) Thanks, trying to be positive. Its been one of those issues that I put aside because other things going on and didn't think there was anything to do about it. She almost taught me how to use a catheter today because too much urine staying behind, yikes.

#279423 - 11/10/17 03:57 PM Re: Spondylitis Symptoms - List Your Symptoms Here [Re: fall_of_moonbeams]  
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Shippingnews Offline
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neck pain, stiffness. I hurt my neck all the time. My rheumy said I am prone to neck injury and shortening my neck muscles(whatever its called) .
And I did it again today, while taking bath. What to do? I am going to physical therapy and she gave me a couple of exercise which help.
I also found a youtube video. Very effective.

https://www.youtube.com/watch?v=B0xlVOJHbiA

But how to not make it occur in first place?


Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16
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