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#516336 - 01/02/17 03:31 PM New to AS
Albatros Offline

Registered: 01/01/17
Posts: 4
Hi all,

Diagnosed less than a year ago in mid thirties, although now looking back have had back pain, neck pain, spine pain for over a decade. Until a year ago, the pain always settled after a few days, I only had flare ups once or twice a year, thought it was nothing other than physical exertion. Then suddenly, the pain was present every day on waking for many many months and the flare up has been there since.

Pain is present almost every day, although I consider myself fortunate and I still can function with minimal impact, and work full time with the use of NSAIDS. Running hurts like hell some days, which puts me off a little because I am a very active person.

I have one question that I have of other sufferers. Does anyone experience headaches with AS? My reading on AS suggests everyone experices different symptoms and severity and I would be interested to see if anyone else reports this symptom. I might add prior to diagnosis, I had every test under the sun and nothing was found until bloods (hla-b27 +) and MRI carried out. In every other aspect, I am perfectly fit and healthy from head to toe other than the AS.

I am a bit of an optimist, and I remain positive that my AS will settle with age. My doctor said this sometimes happens and my research suggests it is possible also. Can anyone share any positive stories, I believe that keeping a positive outlook helps with general health, in particular with pain associated with AS.


#516338 - 01/03/17 02:49 AM Re: New to AS [Re: Albatros]
ineptwill Offline

Registered: 03/31/02
Posts: 5183
Do you mean Headaches or head pain! An odd distinction I know but important I think. I have endured head pains for years but not headaches particularly. I take Enbrel which has helped considerably and all but eradicated the head pain.

I am told that generally speaking all as sufferers finish up with neck and head pains, sort of like the final terminus for us lucky people.

Am sure many more will have a view on this.

Alan G

#516343 - 01/03/17 08:51 PM Re: New to AS [Re: Albatros]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6032
Loc: Reno or SFLU Philippines
WELCOME, Albatros:

Sorry You are in the club, but You have made it to the right place!

Regret NSAIDs greatly accelerated my own AS; hopes that You will not experience this unfortunate outcome.

Thanks to diet and antibiotics, I have not had active AS in about 15 years--knock wood! A positive and negative story too.

Like Alan, I have had pain that seemed like headaches but probably was neck pain. Sometimes, I could use hot and cold against this with pretty immediate results. Best thing I ever did was join a health club.

Despite my advancing age, the AS was not "burning itself out," as doctors are so fond of saying would happen, and the skeletal damage worsened, I got kidney stones and iritis often enough to be very worried, so I required the help beyond conventional medicine.

Soon after starting NSAIDs I developed knee edema, then kyphosis, later kidney stones, and then iritis.

You would not know it today, but I was also quite fit at Your age, and a rated racquetball player, also engaged in skiing, running, and weight training.

Health is the most important retirement account; AS is a wake-up call!

Important AS Resources

Professor Ebringer: On Diet and AS;

RED ARROW --> Philippines

#516344 - 01/04/17 04:29 AM Re: New to AS [Re: ineptwill]
Albatros Offline

Registered: 01/01/17
Posts: 4
Thanks for the replies.

Now you've got me thinking. I'd say it's a bit of both, I definitely have head pain around the base of the neck but a few times a month I get these headaches behind the eyes. I'm thinking I may be getting uveitis, but don't have the red eyes so not sure what to think. I am getting closer to 40, so ny eyesight might also be a cause. Maybe worth checking with the doctor, uveitis doesn't look pretty.

Would anyone know if uveitis is gradual as with AS, or sudden?

John, sorry to hear your AS advanced. It's definitely not great being in pain all the time as I've found out in the past year. I wish I didn't have to be here but I'm sure no one else does either, but great that I found this site. At this stage I'm still very active and I do hope that continues for many years to come. In my case, NSAIDS have certainly helped and I can sleep again after many months of waking at 3 or 4 am in pain. I'd say they have worked for me, but I have noticed they are No longer as effective as when I first started.

Is this common with anyone else?

#516345 - 01/04/17 08:29 AM Re: New to AS [Re: Albatros]
ineptwill Offline

Registered: 03/31/02
Posts: 5183
Uevitis is grim, or so I am told. Thankfully throughout my 50 years of AS I have never had it. I believe that John has had it and know that Mig has, Mig is the shorty blonde administrator on here! fairly bright but eats too much!!! I might now be in trouble!!!!

NSAIDS never did much for me so not sure whether there usefulness declines over time.

Biologics are the best medicine that I have tried, Mig has biologics too, have I mentioned Mig? A shorty blonde bossy type? Oh yes, I already did.....Best advice I ever had was Keep mobile, seems like you are doing just that, keep at it

Alan G (Mig catcher)

#516353 - 01/04/17 06:18 PM Re: New to AS [Re: ineptwill]
WendyR Offline

Registered: 12/23/08
Posts: 5230
Loc: BC, Canada

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil

#516354 - 01/04/17 08:30 PM Re: New to AS [Re: Albatros]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6032
Loc: Reno or SFLU Philippines
Hello, Albatros:

You will SUDDENLY KNOW ABSOLUTELY when You have AAU (iritis); it is like a hot icepick through the eye and photophobia--that is one cannot even look at any light without overwhelming tears. That is the most common description, however, there is a "smoldering" type of iritis that is not so severe and more insidious because it will rob your sight without making its presence so painful.

PAIN is the signal that something is wrong, and being able to ignore the pain is good to some degree, but it does not help the underlying problem. If our check engine light stays on and all we do is put tape over it, eventually we will have a much bigger repair job than if we had addressed the situation early.

Yes, NSAIDs require ever stronger agents in higher and higher dosages because they are busy making the AS worse (that's MY explanation; some claim that the drugs "just lose efficacy"--I'm not buying that one). I would go for the biologics immediately as I believe they actually do slow down the AS and are great inflammation controllers; they, however, do not address the underlying cause of AS. Diet (variously modified from NSD/LSD) plus Enbrel certainly has extended the useful life of this drug in several people.

Don't worry about too much for now as our collective experiences will get You through,

Important AS Resources

Professor Ebringer: On Diet and AS;

RED ARROW --> Philippines

#516356 - 01/05/17 12:11 AM Re: New to AS [Re: Albatros]
Jennyfaaa Offline

Registered: 12/28/16
Posts: 11
Hey there, with my AS i get severe migraines that sometimes last up to 4-5 days. As for the Uveitis, i was diagnosed with posterior uveitis before they had my definitive diagnosis of AS. Once diagnosed with the AS i was told the Uveitis was a clear warning sign. My most recent migraine battle lasted 4 days and i actually thought it was my uveitis acting up, rushed to the eye doc to be told it was a bad migraine. When i was diagnosed with the uveitis it was a sudden onset of it. One day it wasnt there the next day it was awful. Since i have posterior uveitis the active lesions are extremely close to my optic nerve and i have lost a decent part of my central vision to it between flares. If you think uveitis is a posibility i suggest finding yourself a retinal specialist! Keep up with eye exams and when you go to the dr get one of those magnets with the dot in the middle of the grid and check your eye sight daily!

#516358 - 01/05/17 02:00 AM Re: New to AS [Re: Jennyfaaa]
Albatros Offline

Registered: 01/01/17
Posts: 4
Thank to everyone for the replies so far.

I think it's safe to say it's not uveitis for me as the headaches have been a regular part of my life for years, I recall my doctor saying "you'll know if you have uveitis" and the replies here suggest it hurts like hell and I think that's what my doctor was suggesting. My headaches are dull, definitely not migraine in nature and last a few hours to a day at most and don't cause too much distress, but nice to know why sometimes, so thought AS might be a possible cause for me.

John, NSAIDS are not my first choice and my first preference would be biologics. But II may not qualify until it gets worse, so I've been left on NSAIDS. This blows me away! Whilst the NSAIDS have improved my life, it could be better. I can sleep again, which is great but I do have painful SI joints almost daily, as well as shoulder and spine pain. Like I've said before, I can endure the pain, but less, or none would be better. I've spoken to a few people on biologics and been told they are amazing.

Thanks again for the replies, it's a good site and great to get some info from others in the same situation. Whilst I appreciate the work Doctors do, they don't experience the pain personally.

#516365 - 01/05/17 07:38 AM Re: New to AS [Re: WendyR]
ineptwill Offline

Registered: 03/31/02
Posts: 5183
what you laughing at..... cry

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