I know from experience how hard it can be to describe some of the pains I experience. Putting it in words.

But as a still undiagnosed patient, I really need to have something to compare with. The "official" descriptions are easy enough...."pain in the spine, inflammation, joint pain etc."

Thats doesnt really cut it for me.

I'd like to hear from you that have had many years to get used to and adapt to this, how was:

Your pain in the beginning?
Where did it hit you first?
Was there anything in particular that set it off?
Did the pains change once you fused?
Wich joint pains were the worst?
Wich are easier to live with?
Description of the iliosacral joint pains?

Did you have any peripheral symptoms that stemmed from inflamed spine or actual disc bulging pressing on spinal nerves due to deformation of the spine?

Do any of you have neuropathy linked to AS?

Have you ever been tested and found to have too low Vitamin D? -I just had this from a blood test, and all the GP said was with sun and some fruit it should get back up. Is it linked to AS, and how?


Please do a small write-up, I want to know! Every scrap of information makes me stronger and better prepared.

Love
gilth

Hi Gilth,

I started having sever Si joint pain when I was 23, now I am 50. After three years my joints in my feet flared and most of my toes swelled up and looked like cocktail suasages. I was then finally sent to a rheumatologist, who at that time orded a bone scan, and blood work. I was diagnosed at that time.

I started Nsiads, and admitted to hospital for IV steroids numerous times.My Left SI was injected with sterois, which didn't really help. I was then started on Amitriptyline for some pain releife and it helped, and I slept well with it.

I have had years of Thoracic back pain especially at night, and the SI joints hardly hurt anymore

I have had iritis twice, but has been quiet for six years.
Right now it is in my hips and feet. I can't take Nsaids, or narcotics, so I just tough it out.

It isn't as bad as it was when I was in my 20-30. I often wondered if food poisoning I got in Antiqua is what triggered mine.

Hope this helps.

Janet

* beginning: - SIs
* Worse: - SIs - HORRIBLE - followed later by Neck - GHASTLY - HA, followed by gut (Oh boy, the gut GGGGRRRRR)
* Don't know: - did suffer several bouts of food poisoning
* Not yet fused, though SI space narrowed on X-Ray
* Worst joint pains?: - SIs followed by neck followed by shoulders, knees, thoracic area (a constant for YEARS); feet - DEBILITATING
* Live with?: - wrist and hands (best) then R. elbow, so long as don't use it too much! Then knees and feet - so long as I don't walk!!
* IS joint pain? - like a knife being driven deep with agonizing burning pain, INability to mov - really. INdescribable

Yes. Vascular problems - hence feet: toes 1&2 on both feet are numb. And vascular dysregulation, NTG (no tension glaucoma) which is now considered as a vascular dysregulation.

BTW - if your D3 is low, please supplement with Cholecalciferol 100,000IU per month. D3 should read 65 - 80 ng/ml. Ask your doctor 'what' your D3 numbers ARE. Sun and fruit will NOT do it for you, not unless you live in sunny climes and sunbathe for 20 mins in the am, and do NOT bathe for 48 hours as bathing will wash off the beneficial effects of the sun *before the skin can do its job of converting sunlight INTO D3.

Inflammation removes D3 which in turn has a bad effect on bones which in turn leads to osteoporosis.

Will ALSO need to take supplements/minerals. Have posted a raft of information in the past few days on D3 and supplementing. Important for AS'ers that we take cognisance of D3 readings and how to counteract, and TO counteract - not only inflammation, but, many drugs that we take also deplete body of D3...

Take care -

I have often wondered why we don't have a place in our profiles where people could go and look at our long histories, med's, procedures and such as some other message boards have.

Pain with dx of Ulcerative Colitis and A.S. came at age of 28-I am now 54 and never have addapted.

Hit first in the S.I. joints
What set it off was the Ulcerative Colitis dx 8 months prior.
Yes, where fused there is less pain.
Worst pain right now is Thoracic and neck
Easiest to live with would be my wrist
I have Rhizotomies done to S.I. area to block the pain and extreme pressure there. Unable to walk without Rhizotomies.
Peripheral symptoms would be shoulder pain and increased pain.
No neuropathy
I have been taking Vitamin D for about 6 years and my levels are good but it doesn't change any of the pain. I live in the Pac Northwest where we rarely get any sun so we all have to take it supplementally.

we kinda do under the "about my disease".....anyone with enough posts should be able to see it, you should be able to.

just more of us need to write up our profiles, me included.
i was waiting til "things" stopped changing regarding dx and treatment.
think the first has stabilized, and the second probably never really does.
soon......

Let me see if I have it right. SI pain, would be the one where it hurts from almost the top of the bones above your hip joints and at an angle towards your groin and the same in the backside?

Thats what I think of as SI pain, am I close?

i was lucky i was already seeing a PT for my upper back / neck problems when my SI joint inflammation started. she was able to dx it to my SI joint immediately.

for me, mild is pain and swelling in that "dimple area" where the spine joins the pelvis, and there will be pain in the middle of my buttocks, especially upon sitting.

when its bad, the back muscles spasm in response. that honestly is the worst of the pain, the muscle spasms in the back. different back muscle spasms depending on if its the left or the right, "high" or "low". that is the pain that makes one scream. like a giant anaconda squeezing (or something like that).

i highly recommend a PT to help manage the SI joint problems. now my chiro does what PTs used to do for me.

ice helps a lot. ultrasound helps as well. cortisone injections have helped me in the past. now the flector patch over it helps in between flares. for flares, in the past it was lots of ice. last time, in march, i tried a pred taper, and that worked so much better! aleve has helped it in the past, but more than a few pills and i've got edema to contend with, and gastritis.

That's about it gilth. And tucks in under the buttock. Runs lower back just at the 'bum' line. Can also 'knuckle' it, go carefully, as hurts like blazes...!!

My R.SI is the one that is nasty, whereas the L.SI is fairly OK. Hurts now and again. Then whole back spasms. Blasted AS...

see answers after each question:

Your pain in the beginning?:

horrible then. horrible now. when i flare.

Where did it hit you first?

first was GI: gastritis and IBS. in 1993 at the age of 30. everyone thinks gastritis and IBS are just a bit of pain and discomfort. wrong! severe pain in my stomach, doubled over in pain at times. i remember the first year it hit me. hit in october. i spent thanksgiving day between laying on the couch and cooking in the kitchen. i only knew it wasn't an ulcer cause they scoped it. and knew it was "just" IBS cause they scoped that end to. they saw inflammation and abnormal cells in the intestines but no IBD. still i had undigested food and diarrhea for like a year straight. had to eat every hour to keep the stomach pain modestly under control. at least no pain with the bowels. but not digesting my food properly possibly is what led to the osteopenia.

then i 1998, at the age of 35, ribs and c-spine, then wrists, then in 2000, SI, then feet, then just about every other joint and tendon over the years you can think of. my elbows have been pretty good. other than the SI joint and spine, enthesitis (with the tendonitis and torn tendons and ligaments) was my other main problem.

Was there anything in particular that set it off?

not that i am aware of. age? genetics? hormones? food allergy to casein? finally the GI stuff led to leaky gut lead to arthritis? i had constipation problems from the time i can remember: why else would mom insist i drink that yucky prune juice so routinely? so maybe just a matter of time before that all led to the inflammatory arthritis?

Did the pains change once you fused?

no evidence of fusing.

Wich joint pains were the worst?

SI and neck and ribs cause the most pain. but most of the pain is from muscle spasms and nerve compression, the secondary effects.

then again, its hard to walk on your feet when it feels like you are walking on shards of glass. but, you can usually get off your feet. the other stuff, no real way to get away from it.

Wich are easier to live with?

none really.

Description of the iliosacral joint pains?

see the separate response above.

Did you have any peripheral symptoms that stemmed from inflamed spine or actual disc bulging pressing on spinal nerves due to deformation of the spine?

not really peripheral as in legs/feet or arms/hands.
the neck (c-spine) osteophytes (bone spurs) plus inflammation cause the nerve compression which causes the upper back and neck muscle spasms and that hurts. and the nerves themselves being compressed hurts as well.

i do get some sciatica pain, but really that is nothing compared to the actual nerve compression and muscle spasms.

Do any of you have neuropathy linked to AS?

see above answer.

Have you ever been tested and found to have too low Vitamin D? -I just had this from a blood test, and all the GP said was with sun and some fruit it should get back up. Is it linked to AS, and how?

my D has dropped to as low as 30. when i don't digest my food, my D drops pretty quickly: went from in the 50s to in the 30s in a month one of those times. did blood work right before the flare and a month into this bowel issue. the bowel issue was from the pain. severe pain causes my bowels to stop digesting food.

Hi, gilth:

I am a male with "classic" presentation: Fused SIJs and B27+.


EXTREME. Absolutely debilitating.


R-sciatic nerve.



Yes, food (in retrospect mostly, but I have one incident in particular wherein I was laid flat for a week from eating a large amount of fried rice; I early made the fried food connection).


Yes, sciatic pain went away after fasting 20 days, but eventually lumbago then costochondritis began making my life hell once again.



Hip, when I was unable to walk.


TMJ, periostitis (shin splints), and IBS.


Unable to get into any comfortable position but there is always a nagging pressure/presence there and eventually have cactus spines sticking into lower back and radiating all around the sacrum even to the pubic bone--sharp pains at times, but mostly just pressure and some immobility. The SI Joint is there for a reason and You appreciate that much better once it is gone! When the spine looses its main shock absorber, there is more opportunity for further damage and injury.



Plenty of peripheral neuropathies.


Yes, I do.


Yes, along with Metabolic X Syndrome.

I had AS for over 30 years before finding enough information for me to fully overcome this disease. If You rely upon physicians who are "supposed" to know You will always be disappointed and eventually it will be too late to do anything about the permanent damage caused by AS. I live with this--my own fault.

HEALTH,
John