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Pain & Fatigue #280547
06/10/18 07:45 PM
06/10/18 07:45 PM
Joined: Apr 2018
Posts: 1
C
Ciera Offline OP
First time visitor
Ciera  Offline OP
First time visitor
C

Joined: Apr 2018
Posts: 1
Hello all! My name is Ciera and I am from Lincoln, Nebraska. I am 24 years old. I was diagnosed about a month ago after many different doctors, bloodwork, and many “your pain is normal” or “you need to figure out what’s wrong with you before we can move forward” talks. I finally found someone who listened! And was diagnosed about a week after. I experience unbearable pain in my knees, neck and wrists. Some days I can barely climbs stairs, or brush my own hair. I imagine this could be from going without treatment for so long. They’ve tried two less aggressive medications and both haven’t helped a bit. I go back in within this next week to discuss injections. They said this can cause hair thinning, mouth sores and no other not so great side effects. At this point I will do ANYTHING for a little bit of relief. The fatigue is almost UNBEARABLE. I just want to feel better, I understand that this will take time. There’s history of arthritis in my family but no one has been diagnosed with this particular disease. Any one who has helpful tricks please feel free to share with me? Or maybe someone can tell me that IT WILL GET BETTER. I think this forum could really be helpful to me. Thanks guys!

Re: Pain & Fatigue [Re: Ciera] #280548
06/10/18 11:56 PM
06/10/18 11:56 PM
Joined: May 2010
Posts: 1,430
Whidbey Island WA
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WhiteCell Offline
Registered Visitor
WhiteCell  Offline
Registered Visitor
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Joined: May 2010
Posts: 1,430
Whidbey Island WA
Welcome Here.

Many of us did not get a diagnosis for many years so your experience is not unusual. Are you currently seeing a Rheumatologist or a primary care MD?

Which medications have you tried so far?


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
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 RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Pain & Fatigue [Re: Ciera] #280700
07/04/18 10:22 PM
07/04/18 10:22 PM
Joined: Jun 2016
Posts: 57
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Jessie10 Offline
Registered Visitor
Jessie10  Offline
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Joined: Jun 2016
Posts: 57
Hi Ciera, tired twenty something here. It gets better with the right medication. A good doctor and support group are helpful. I am a always on the go person. I have two kids, friends, job, etc and have a hard time saying no to social outings and commitments. My best advice: go easy on yourself, eat a good diet, and make and reach small goals for the day so you don’t feel like you aren’t accomplishing anything. Yoga is helpful (if you can muster the energy). I hope you find some relief soon.


28 y/o female. HLA-B27 negative. Dxd AS 4/2016
Enbrel, naproxen

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