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Frustrated #282331 01/05/19 01:37 PM
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AllieG Offline OP
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I am beyond frustrated with this pain. I am on 2 different opioids,Simponi Aia and muscle relaxers and I'm still missing work. After several weeks of calls, I finally got FMLA paperwork form work for my rheumy to fill out,but that doesn't mean I'm going to be pain free. I try to have a positive attitude and I really do most of the time,but since waking up screaming in pain on the 1st, I've been feeling pretty tired of dealing with AS. Anyone else get like this sometimes? I don't wanna bring my friends and family down by complaining about this...


Allie G., female
Ankylosing Spondolytis Sufferer since 2013, symptoms since 2011
Austin,TX
Simponi Aria
Oxycodone(10 mg/3x a day)
Prednisone(10 mg/ daily for 5 days)
Folic Acid(10 mg/day)
Vitamin D(1,000 IU/day, 50,000/week)
Baclofen(20 mg 3x/day
Gabapentin (1200 mg/3 x a day)
Fentanyl(12mcg/hr)
Re: Frustrated [Re: AllieG] #282332 01/05/19 03:59 PM
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SouthernMoss Online
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Chronic pain is exhausting, both physically and mentally. It's important that you be able to share with people who know what you are going through on a daily basis. Are there any support groups in your area for people dealing with chronic pain? They wouldn't have to be AS specific.

There are also some good support groups on FB. Two that I know of are "Ankylosing Spondylitis For Women" and "Standing Strong Together Against Ankylosing Spondylitis". These two are tightly moderated and haters are quickly booted. The second one was started by Cookie Hopper, a wonderful AS advocate.

You might also consider seeing a counselor or therapist. They can teach you techniques to help you deal with the pain.

I'm sorry you are having so much pain. frown


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Frustrated [Re: AllieG] #282336 01/06/19 04:11 AM
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WhiteCell Offline
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Has your pain reduced by any of the meds you take?. Can you take Voltaren or another strong NSAID? Have you asked your doctor about Toraadol ? I would...

Last edited by WhiteCell; 01/06/19 04:13 AM.

Starting at 18 yrs old; 1971 Reiter's Syndrome. Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by Radio Frequency Ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~

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