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Pain & Fatigue #280547 06/10/18 07:45 PM
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Ciera Offline OP
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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
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WhiteCell Offline
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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?


Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.
Right Eye Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Cardiac Stent to RCA 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: Pain & Fatigue [Re: Ciera] #280700 07/04/18 10:22 PM
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Jessie10 Offline
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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
Re: Pain & Fatigue [Re: Ciera] #283648 10/04/19 07:36 PM
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Imnotsure Offline
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Fatique was a major problem for me as well. I was a zombie and barely functional after work but I might have a fix your and everyone else that fixed 80% of mine.

AS wrecks havoc on you entire bodily fuctions and as a result the oxidative stress is a major cause of the chronic fatique.

Ubiquinol & L-Carnosine.

Your body naturally makes these 2 supplements. I figured out the sweet dosing spot trying different doses and read several studies to ensure too much wont have negative effects.

Take 400mg of Ubquinol in the morning, 500mg of L-Carnosine in the monring and another 500mg L-Carnosine before 4pm.

The reason for spacing out the Carnosine is that an enzyme quickly breaks it. Taking 1000mg a day allows it to stay in your system as the enzyme can't break it down fast enough and thus getting the benefits you need. **** DO NOT TAKE IF YOU ARE TAKING SATINES Medications**** Beyond that the 2 are perfectly safe and no side effects.

When you buy the Ubquinol make sure it is made with Olive oil as many come with Sunflower which is not good for those with AS. When you buy the L-Carnosine make sure it has no other supplements added such as Vitamin C in it.

I Take my supplements in powered forms because its cheaper and NO FILLERS. Mix the Ubquinol in olive oil as its a fat soluble. Meaning you cannot absorb it with out fat. The Carnosine is water soluble. The Ubquinol that you buy at the store is already mixed with Olive oil so no need to worry unless you buy it in pure crystal form as I do.

The recommended does of Ubquinol is 100mg but that is for a normal person and that dose will do nothing for you. Again Start off at 400mg.
Both of these supplements change everything. Here are 2 links to read up on and when you read it, it sounds too good to be true and for once it is true. You should notice something the same day but as the days go on you start to notice more and more changes.

Both of these supplements are not VEGAN free so your SOL. Ubquinol is derived from Yeast and Carnosine is from Meats/fish


https://selfhacked.com/blog/ubiquinol-benefits/

https://selfhacked.com/blog/carnosine/

I'm going to put putting together list of supplements that actually help you improve your quality of life and your welcome to contact me for information.



Last edited by Imnotsure; 10/04/19 07:42 PM.

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