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

Thanks all for the responses so far! -This answers a lot of things I have wondered about!

Keep it coming!

I can relate to back spasms and cramps. Right now, my herniated disc seems to be getting worse. The last 2 days I I feel and hear a joint in my lower back cracking by itself when I sit down crouched. Seems the pain gets worse then to. I used to get this only in my upper back

Hi there, hope this helps:

Your pain in the beginning?

Overall back pain started when I was 15. Bad enough that I went to a chiro. Lower back, thoracic and neck (knew how to alleviate occiputal pain by the time I was 18). I'm B27+ by the way.

Where did it hit you first?

SIs, thoracic and neck.

Was there anything in particular that set it off?

Not that I know of.

Did the pains change once you fused?

Not sure. Nothing is completely fused at this point; although I have noticed that the left SI is easing the more fused it becomes. Or maybe the syndesmophytes at L5 and the fusing right SI are distracting me from it.

Wich joint pains were the worst?

Frankly, it depends on the day. Standing up from my desk at the age of 27 and being unable to walk was pretty horrifying. When my SIs are acting up, the lower back burns and if it gets bad enough, the sciatic nerve starts. That's really damned bad. But then, if my thoracics act up, they burn and feel, lately (since I've been eating wheat again) as if they're going to shatter. That's pretty horrible. And the neck hurts all the time, it just varies with no rhyme or reason. Some days not so bad, other days mind numbing. And now, my elbows are starting and my fingers. So, I can't give you one easy answer on that.

Wich are easier to live with?

Depends on the day and where my overall pain levels are. I can't answer that. None of them is easy to live with.

Description of the iliosacral joint pains?

Burning, aching, tightness like and elastic band stretched to the breaking point, my sit bones are going to poke through my butt and tear a hole in the seat beneath me. It's like I'm sitting on a sharp rock, but the sharp rock is my butt. And then the maddening sciatic nerve pain starts and goes down my leg.

I hope that helps gilth.

Warm Hugs,

Not diagnosed,so my answers wont be relevant to most of the questions, but had to answer one of them:

Which is easiest to live with?
None of the pains are easy to live with, and the point at which it becomes "can't live with it" also varies a lot. Sometimes I can keep on going with huge amounts of pain, and other times I fall apart completely at much lower levels of pain. Some of that has to do with duration of it - even very low levels of pain constantly can just completely wear away at my soul, and some of it has to do with mental frustration - when I can't do something I badly want to do and all of a sudden I become incredibly aware of pain levels and can't cope. I can also slightly put pain to the back of my mind if I am focussing on getting through to some point in the future - like right now I know I can't see a rheumatologist till July, and actually I'm finding its almost easier to cope with pain right now than it has been, even though I am taking far more codeine, and wiping out with tiredness easier. I wouldn't be surprised at all if I mentally and physically crash once I have seen the rheumatologist - especially if he can't offer me anything different immediately.

In hindsight I also can't believe how much I went through before I actually even considered I might have something that had a name and could be treated. I knew our family all had "arthritis" and just lived with it, so I did too. Stupid really. If I had gone off to doctors in my teens or 20's I might not be in the position I am now.

Sorry Sue's I can't find it. Lame in my membrane! Can you tell me exactly where to go please?

Hmm...the pains started in SI's with me too. Or at first there was suddenly a problem with my neck if I slept in an even slightly wrong position. Then left side SI wich spread to right too, and lower spine.
Then after months a chiro/naprapat cracked my neck and it set off like crazy.

Jaw has been for years and years but got maddeningly worse after that.

And that blasted stomach infection I got in Egypt...feels like it was the catalyst that sprung it all into high gear.

I have had AS for 25 years now.

Your pain in the beginning?
SI joints and diagnosed as sciatica. Also off and on cases of iritis. no doc connected the two for a long time (no back or small joint pain)

Where did it hit you first?
SI joint and Eyes

Was there anything in particular that set it off?
Yes I had a very bad week with a fever of over 104 and incredibly sick. not too long after that my first irits case occurred and the sciatica

Did the pains change once you fused?
after 25 years of this crap only my right SI joint is fused and yes the sciatica went away once it fused

Wich joint pains were the worst?
Some knee involvement now but I have not really had significant joint involvement

Wich are easier to live with?
N/A

Description of the iliosacral joint pains?
Shooting pains down my leg in the back. could not walk at times

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?
no

Do any of you have neuropathy linked to AS?
no

Have you ever been tested and found to have too low Vitamin D?

yes I supplement at 4,000 IU a day now to stay in the proper range

I have had this diagnoses for 45+ years. Yes! I am old!! Thank Goodness!

I began in my teens with various aches and pains and was diagnosed first with RA. Then came AS and SLE and Fibro, etc. etc.

My worst pain in the beginning was SI joints where I could hardly stand up from a sitting position with muscle spasms so bad around my tailbone. The pain was just like a very bad "charley horse" inside. I had pain that went to my hips, under my buttocks and down the backs of my legs.

It has been down my legs into my feet.

Now I have developed 2 curvatures and have 8 bulging discs and pain from the top of my neck to the bottom of my tailbone.

I had years of Iritis/Uveitis that was only controlled by oral Imuran. The Pred drops only succeeded in giving me early cataracts.

I took Prednisone orally for many years at doses from 60 mg. a day to 100 mg. IVSolumedrol when hospitalized. I have taken every thing from Placquenil, to oral and injected MTX, Imuran, Humira, Remicade and just about every other med there is for these diseases.

What makes me worse is overdoing it. Standing makes me hurt a lot more than walking but I can't walk long. Sitting very long also hurts as well as laying. I am constantly changing positions.

Yes, my Vitamin D was at 7 which is where the count begins according to my dr. The same as "0" with other things. I was taking 50,000 once a week until we got it up some. I am still taking 3200 daily of D3 and calcium.

Prednisone is a tough drug. It added to my problems by affecting my blood sugar, my heart, my intestines, my bones, etc. etc. I am not saying "Don't take it." I think it saved my life at different times. I am just giving input.

I wish you the very best. I am not going to write a longer novel than this one already is.

This may not be what you would have chosen but remember that it is "doable". Support makes all of the difference in the world along with eating right and exercising (water exercise helps me the most).

Blessings.
Possi

Hi Gilth,

Documented my past experience here:-
http://spondylitis.homestead.com/files/index.htm

I used to heavily mine the info, expmt and documented them on that website.
(not updating last few years as I forgot AS).

Regards,
Krishna

Egad, how could I forget the iritis factor!!?? Had my first bout of iritis when I was 18. Again at 28 - for 2 years - again at 38, and again at 42. Haven't had it since starting biologics, thank goodness.

The eyes are a truly bad one!!

Warm hugs,

Your pain in the beginning?
sharp stabbing pain - from age 13, would go on and off over the years.

Where did it hit you first?
The SI region.

Was there anything in particular that set it off?
I did a lot of cycling and that is when I started noticing the pain.

Did the pains change once you fused?
Not fused.

Wich joint pains were the worst?
Hip - makes it very difficult to walk
feet - can make it very painful to walk.
Neck - can make it extremely difficult to concentrate or sleep.

Wich are easier to live with?
Back, ribs, shin etc

Description of the iliosacral joint pains?
Acute stabbing pain early on. Only dull aches(barely noticeable) now.

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 exactly, but peripheral symptoms( numbness and pain) exist due to a large tarlov cyst at S1-S3

Do any of you have neuropathy linked to AS?
Yes, several

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?
No.

my new updated answer regarding vitamin D (for me):

though i could be wrong, i think my low D levels and having to take more than the normal person, is due to my fatty liver disease (due to insulin resistance / metabolic syndrome). from every thing i've been reading, a fatty liver can't process the vitamin D (from food or sunlight) properly, hence my needing more.

one of my doctors the other week suggested this as my problem, and as i read, i think, for me, she is correct.

so, i think my low D is due to fatty liver due to insulin resistance.

hoping losing weight will be the ticket for me. time will tell.

Hi Sue: That is great you and your doctor figured out what s causing your low D level.

I have a friend with Lupus who has fatty liver too and most likely is low on D too. I will let her know your discovery.

Keep us posted. Hope losing weight will do the trick.

Shari