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#516901 04/15/17 12:21 PM
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Hello Everyone,

I'm wondering if you can shed some light on how my experience compares to yours as AS developed.

I have not been diagnosed with AS but have finally, after three years, found a doctor willing to take me seriously and order tests for it.

This has been my experience...

I'm 29. Three years ago (April of 2014), I started developing a sharp, twingy pain in my left SI joint area. At the time, I attributed it to a yoga stretch I'd done. It bothered me only intermittently and I was able to live normally (including getting a yoga teacher's certification over the summer).

I didn't seek treatment into January 2015, when my pain progressed into something more chronic and aching. I experienced (and still experience) occasional sciatica, and pain in my right hip joint, and constant pain in my left SI joint. My doctor's only plan was to tell me to take Ibuprofen, which work in the beginning, but has ceased to help.

My physical therapist began treating me for a bulging disc, but treatments didn't work and seemed to make the problem worse. An MRI I had in September 2015 (a year and a half later) did reveal a small bulging disc, and disc degeneration in my L5-S1 but the spine surgeon I saw thought the disc was too small to be causing my symptoms, and I "probably just had inflammation in [my] SI joint." (Caused by what?)

After about a year and a half, I developed significant pain in my hip when I slept on my left side. I haven't slept on my left side now for a year and a half. When I talk to doctors about this, they seem completely perplexed and change the subject.

I began seeing a chiropractor who is always able to successfully give me a great SI joint manipulation (on both sides) but the pain always returns within less than an hour. In December of 2015, he ordered an X-ray which showed some signs of early degeneration in my right SI joint (not the side where I was feeling the pain.)

At some point along the way a doctor prescribed me prednisone, which did help with the pain, but the pain returned after a few weeks. Since that time I have also seen three more physical therapists (four total) whose treatments have had little (or intermittent) effect. After almost a year of being shuffled around by doctors (one highly celebrated pain management doctor said she believed my pain was psychosomatic and gave me mindfulness pamphlets to cure my pain) I management doctor who would do stuff.

He has given me three steroid injections. SI joint, facet joints, and spinal column. None have worked.

I'm here now because about ten days ago, I developed a significant pain in the back, left side of my spine (where the spine attaches to the rib). A few days after it came on I was in so much pain I cried out when I pushed myself out of bed, and it hurt to badly to lean forward that I didn't use my turn signal on my drive to work.

I saw a new doctor (NP, actually) who--after some convincing from me--agreed to give me the HLA-B27 test. (We're now waiting for my insurance to approve it.) She also ordered a new MRI as mine was a year and a half ago, and referred me to a new pain management doctor. (She didn't refer me to a rheumatologist and I didn't push it since I'd already pushed so hard for the AS test, and I finally found a doctor who will listen to me, and I want to stay in her good graces...)

The pain in my mid back (the new pain) has now softened into a somewhat constant ache. The only treatments I have had for it are a massage (no effect...almost made it worse) and ice (which always helps.)

Overall, the pain in my low back (the old pain) is mild (about a 3 on the pain scale), but persistent. I take a hot bath every night, which does take the edge of the pain, and sometimes use ice packs (when I remember to put them in the freezer) which help pretty significantly.

I have not followed through making my MRI appointment, appointments with new pain management doctors (she didn't refer me to a rheumotologist), or getting my labs done even though my appointment was five days ago. I think I'm scared.

I'm scared that I might have AS, but I'm almost more scared that I don't and I'll have to keep living with this undiagnosed, untreated pain.

Some of my symptoms seem to point to AS: pain worse at right, started in SI joints, progressed to midback near the rib cage, ice is helpful, etc.

Some symptoms don't point to AS: (mostly) unilateral pain, MRI showing a disc bulge, little response to anti-inflammatories (with the exception of prednisone).

I apologize for the length of this post. I guess I'm looking for a little guidance so I can prepare myself for what my tests might reveal.

For those of you diagnosed with AS, how does my experience compare to yours?

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WELCOME, laurelalc:

What You have described is the classic progression of AS, especially the pain being "unilateral." The clue with age of onset indicates that You are a young lady and fortunately still have SIJ movement, despite some degeneration.

Quote:
one highly celebrated pain management doctor said she believed my pain was psychosomatic and gave me mindfulness pamphlets to cure my pain


I can smell the greasepaint and imagine big floppy shoes and big red nose!

Any physician who cannot recognize pre-AS will do more damage than good and very few are capable of telling You how to avoid SIJ fusion and other permanent skeletal damage.

You did not mention any digestive issues, dry mouth, psoriatic lesions, crepitus, etc; it is early in the disease process.

I have a link to my dropbox "Important AS Resources" that has some diagnostic help for people still uncertain. And I regret that the old serological test for HLA B27 is still being used because there is one chance in only three that it will provide a false negative result; I would not trust this test as only Fc or ELISA are definitive.

I am glad You made it here, and hope that You will take advantage of all the resources we offer,

HEALTH,
John

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Laurelalc,

It sure sounds how my started 12 years ago. My first doctor was terrible and basically said it was in my head. After 5-6 year of it getti worse and more frequent he finally reffered me to a back institue which took xrays and said they see no issues and that I should just get a personal trainer. Funny thing was at that time I was a martial artist and certified personal trainer and also later became a yoga instructor. I saw chiro, physio and massgae and only the chiro help a little but none thought of AS.
I finally found a new doctor which can be hard to do in Canada. She took it more serioisly and got xrays and mri but I was hla-b27 negative so she did bot diagnose me. It was till I had a terrible flare up that imo ilized me for 2 weeks that i became pushy with the doctors and started insisting on them looking deeper. It still took another few years for permenant damage to show that I finally got reffered to a rheumatologist and diagnosed.

So key advice is insisit on a referrel to a rheumatoligist becuase it can take a log time to see one if your in Canada. Second stop taking ibbprufin without a stomach protecter it will destroy your digestive tract and make things even worse. If you need to take nsaids get a prescription for a stomach protector or a nsaid with it built in. Try the NSD diet it really does seem to help but it is taking me sometime to maintain it and there are other food I react to likely from the nsaid damage causing leaky gut. I have to stay away from all starch, msg, red meat, mushrooms, peas, pretty much anything in a package. I am still balancing my diet to keep hunger away and energy levels up but it is worth trying.

This group has lots of helpful knowledge

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Originally Posted By laurelalc
one highly celebrated pain management doctor said she believed my pain was psychosomatic and gave me mindfulness pamphlets to cure my pain

Originally Posted By Kahuna
It sure sounds how my started 12 years ago. My first doctor was terrible and basically said it was in my head.

I finally found a new doctor which can be hard to do in Canada. She took it more serioisly and got xrays and mri but I was hla-b27 negative so she did bot diagnose me. It was till I had a terrible flare up that imo ilized me for 2 weeks that i became pushy with the doctors and started insisting on them looking deeper. It still took another few years for permenant damage to show that I finally got reffered to a rheumatologist and diagnosed.

THANK YOU! I am so grateful for this thread. I also have had a long history of pain and a challenging path to diagnosis.

I was finally referred to a rheumatologist because of severe pain in my finger joints that would appear each morning (at its worst I cannot make a fist), last an hour or so, then mostly disappear until the next morning (although the swelling can last most of the day).

The rhematologist ran lots blood tests, all of which came back negative, including my HLA B27. My xray showed changes in my SI joints but concluded they were degenerative because there were no erosions. Most importantly, in light of my test results, she discounted all of my symptoms, which in addition to the finger pain, included a 20 year history of SI joint pain that started in my teens, intermittent shortness of breath that had no obvious cause, and persistent ongoing tendinitis in my hip that did not improve within a year. Also, a significant family history of early onset lower back pain and arthritis with no obvious cause.

The kicker? She told me the pain was in my head. And then told me I should try mindfulness meditation. Sound familiar?

Fortunately, I had already gone searching for a cause on my own and found myself here. I started NSD the very same day. In less than 2 weeks I had 80% less pain in my fingers - it was amazing. My shortness of breath and my tendinitis also disappeared. I had already stopped eating grains and dairy many years ago, because it seemed to improve my pain, but I had always suspected there was some other food factor I was missing. Now I know it's starch.

While my negative HLA B27 is likely accurate, I suspect the rest of my test results were normal (e.g., ESR, CRP) because I have been eating a low starch diet for years - I've basically been treating myself unknowingly. Since my SI and lower back pain were already a fraction of what they were 10 years ago when I was a full-time starch eater, there's a good chance any erosions I might once have had have since healed.

I have now given up on trying to get a diagnosis. It's not like I was going to take their garbage medicines anyways; I just wanted to know what was wrong with me so I could find my own ways to treat it. But it has left me uncertain about where I "belong". I've been posting in the NSD forum anyways, but my rheumatologist's very confident dismissal and condescension definitely made me question whether I should be here. I feel better having read your stories. And feel more confident that I'm in the right place.

Last edited by Kellybells; 04/18/17 10:21 PM.

Suspected USpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner
F
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Originally Posted By Kellybells


I have now given up on trying to get a diagnosis. It's not like I was going to take their garbage medicines anyways;



Don't give up too soon on getting an accurate diagnosis. Rheumatology complaints can and do change suddenly or over time sometimes a very long time. The day might come when an accurate diagnosis is made. Your condition may by then have deteriorated to such an extent that you will be only too glad to take their "garbage medicines".

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Hi Laurelalc,

Yes, unfortunately you could have AS. You really do need a referral to see a Rheumatologist, as the HLA B27 test alone is not diagnostic and can throw docs who are not trained in AS off track. A Rheumatologist will look at the whole picture and has the best chance of ruling AS in or out with the proper tests.

It is a rotten thing to be told it is 'all in your head'. Many of us had to go through that baloney before finding a qualified doctor. When I was told the pain was all in my head, I thought to myself, noooo wrong... it's all in my hip! That was 37 years ago now, and it took me another 2 years before I insisted on being referred to a Rheumatologist, who diagnosed me at my first visit, (long before receiving the HLA B27 test results which supported his/my diagnosis).

AS is often a very delayed diagnosis, even now. Keep going and don't give up!

And welcome to KickAS!


mig
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Very_Addicted_to_AS_Kickin
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It took me 12 years and 5 rheumatologists to get diagnosed with spondyloarthropathy.

The things that finally helped (besides finding the right doctor) were:

pain / inflammation in my neck and SI joint

enthesitis (especially wrists and feet, but lots of other places too)

gastritis

inflammation and small crohn's-like ulcers in the ileum (seen by colonoscopy)...
important that I hadn't had NSAIDs for about 15 years prior because they can cause that too

negative for celiac (biopsy of the upper small intestine, HLA D? gene test, antibody test)

psoriasis (mild, but identified by a dermatologist)

mouth sores

dry eyes

flares

the first few rheumatologists never asked me about psoriasis or GI issues or eye issues when I'd talk about the joint issues....I didn't know the connection of all of these symptoms initially, but the rheumatologists should have. If they'd have only asked the questions, my diagnose could possibly been much sooner.

Once I was diagnosed, I got on Humira and its been a miracle drug. I still have some symptoms, I still flare, but OMG, how it has helped, I can not even begin to describe.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Sep 2015
Posts: 301
Fourth_Degree_AS_Kicker
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Hello Laurelalc:

I went to my GP in Canada beginning in my 20s and with arthritic, connective tissue and IBS complaints. My GP was on the ball and ran rheumatoid tests which came back negative. After about five years he finally labelled me with a mild case of fibromyalgia.

Finally at the age of 45 I began to get a strange pain in my temples, scalp and sinuses after a SCUBA diving mishap in which sea water got into the chambers in my head upon surfacing -- it's called a reverse blockage and can happen if you go diving with a cold. The symptoms grew and spread to the atlas joint at the base of the skull but doctors could not diagnose it. To combat the pain I took lots of NSAIDS. BIGGEST MISTAKE I MADE IN MY LIFE (aside from my first girlfriend).

Without realizing I was badly destroying my gut lining, or how broad the consequences are, I was setting myself up with full blown AS symptoms effecting the whole spine, skull, eyes, and foreskin, with night-sweats in which I would wake up after four hours and feel like I had been bitten by a snake. To stop the pain and sick feeling I would get out of bed and do yoga. Everything was stiff: hands, toes, knees,... The symptom peak took about two years to fully develop after the SCUBA fiasco. It occurred to me that the NSAIDs were the culprit and within a month after ceasing them the night-sweats stopped.

I easily self diagnosed myself and went to see a rheumatologist at a hospital (no wait since I now live in China and there are no GPs) that determined me to be HLA-B27 negative, have no antibodies for AS, but by using an MRI I do have inflammation in the whole spine and head. He wasn't able to check enough boxes in his AS criteria check list and so would not diagnose me with AS. He was also adamant that there is no association between AS and bacteria! That was almost two years ago and the spine is deteriorating. I take no medicine and only try to stay away from starches et-al.

In hindsight I can see that my extremely weak AS symptoms correlated with increased use of NSAIDs back in my 20s and 30s. Using NSAIDs is the biggest mistake because gut dysfunction seems to precede most illness I ever had. I am still trying to heal my gut.

Moral of the story... AVOID HURTING YOUR GUT AND MICROBIOME IN IT. I.e. avoid NSAIDs, binge drinking, antibiotics, long-term stress, late nights, negative people and bad cooks!


HLA-B27 neg, vague AS symptoms in 20s and early 30s
1993:fibromyalgia (age 25)
2013.07:Reverse blockage in a SCUBA accident
2013.08:Scratched by a sick cat
2013.09:Strange sore throat then meningitis
2014:Chronic inflammation at the base of the skull
2014 to early 2015:excess NSAID use developed complete axial inflammation, included psoriasis
NSD helped well and but was not perfect
2018.07: weak +'ve tests for borrelia, babesia, bartonella and mycoplasma pneumonia using Armin Lab, ANA=equivocal

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