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#519693 - 06/08/19 07:15 PM Pain Conundrum
mutagen Offline

Registered: 04/14/14
Posts: 16
I'm in so much pain and I don't know what to do. The pain is the most severe in my neck, shoulders, spine, pelvis, and right ankle. Vibrations make the pain worse including driving and the speakers at church.

I'm on Remicade and my inflammatory markers are not elevated. My blood pressure is 124/76 with a pulse of 102. I'm also on Vicodin, Valium, and Scalaxin, and stretch religiously, and the pain still persists. My rheumatologist makes remarks that on paper I look fine, but I feel like I'm dying.

I've been like this for almost a year. What options do I have and what can I do? I seriously don't want to increase my pain medications, because pain medications cover up the pain and doesn't stop the pain.

#519697 - 06/09/19 05:53 PM Re: Pain Conundrum [Re: mutagen]
wait Offline

Registered: 02/06/10
Posts: 45
Loc: Emmett Michigan USA
Have you tried the no starch diet? My pain always increases of I've eaten too much sugar. Hope you find relief.

#519699 - 06/11/19 05:20 AM Re: Pain Conundrum [Re: mutagen]
Dotyisle Offline

Registered: 03/07/02
Posts: 9494
Loc: Rosario, Argentina
Hello there Mutagen,

You are not the first person to post that inflammatory markers are not elevated despite being in a lot of pain.

When I was in flares my experience was similar to yours. The medication that worked best for me was azulfadine... now I use the no starch diet as my base.

Hope you can find some answers to the pain.

AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

#519704 - 06/11/19 05:48 PM Re: Pain Conundrum [Re: mutagen]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6114
Loc: Reno or SFLU Philippines
Hello, mutagen:

If You are still in pain, why are You taking drugs?

The inflammatory markers are of no value in about 40% of people with AS, but when they indicate they can be very useful.

It is not easy to get inflammation images; nuclear (contrast) bone scan has the best chance and then it is not certain. YOU know where You hurt, so not necessary anyway.

I hope You like water, because the best thing to do is to FAST. Go easy at first, 4-6 days. This should be enough to prove to Yourself the food connection with AS.

When eating--EVOliveOil by the teaspoonful throughout the day (14X or so especially before meals) and perhaps 6g borage seed oil immediately before retiring; should help with morning stiffness, too.

Next step different forum.

Important AS Resources

Professor Ebringer: On Diet and AS;

RED ARROW --> Philippines


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