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#461019 01/23/12 05:32 PM
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Blueforest
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I decided to post on this forum because I really need your advice.

My father had AS and I've been ill for the last 15 years or so but doctors have not been able to diagnose me with anything except Fibromyalgia because all my blood tests are normal, however, I don't think it's FM because my muscles don't hurt and I don't have pain on the so called "tender points". I have bone pain, chronic carpal tunnel syndrome, extreme fatigue, many bouts with tendinitis and/or bursitis, back pain, morning stiffness etc....

And my question is: Can AS cause all these symptoms? Can this disease be so debilitating?

#461024 01/23/12 06:13 PM
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AS is not like fibromyalgia, in that the diagnosis is based on ruling out everything else. AS has specific base symptoms and many possible adjunct symptoms. AS also has specific markers that will show on xrays or MRIs (calcium deposits/bone erosion in the SI and spine); however, the disease may have to progress a while before those are readily seen.

You need to see a rheumatologist experienced with AS to get a definitive diagnosis. Many possibilities could explain your symptoms, with AS being just one consideration.

And yes, AS can be extremely debilitating, especially as it advances (with the rate of advancement varying greatly among those afflicted). Many of us were not able to get a solid diagnosis until after years of pain.

So, get to a qualified rheumy, and good luck.


AS symptoms started 1991. Official dx in 2006 with HLA-B27+, fused SIJ, bone spurs in back, extreme rib/hip pain, and other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage (MS) from it. Getting good results with no-starch diet since 2011.
#461025 01/23/12 06:19 PM
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Yes AS can cause these symptoms, and yes this can be a serious disease that can become debilitating.
I don't know if you have a rhuematologist, they can help diagnose it.
If you have had old x rays from another doctor, I would try and get them, it would give the doctor something to compare.
just a thought you may consider.

#461027 01/23/12 06:21 PM
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WELCOME, Blueforest:


Quote:
And my question is: Can AS cause all these symptoms? Can this disease be so debilitating?


The number one highest incidence for misdiagnosis in AS is FM; aka "I bet I CAN press hard enough here, here, and here to make You hurt!" Just more nonsense from the lazy "benign neglect" crowd. EVENTUALLY--once enough damage is done--You will obtain a diagnosis. A good physician should be able to provide You with the tools to PREVENT the damage.

You already have the knowledge; if Your father was HLA B27 positive You should be tested, but there is no doubt You have AS from Your family history, CHRONIC, CYCLIC, deep bone pain crushing fatigue--AS is NO JOKE; that is why we are here and it can be totally debilitating. The sooner You begin Your own program of disease management the better chances You have to avoid permanent damage.

HEALTH,
John

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blue,
as John is saying, indeed our muscles can be very sore due to an undiagnosed AS. I am negative, but as X=rays change, and doctors dance around my diagnosis for the last the last for years; NSD helps, many of us are proving the AS diagnosis is not a narrow check list.


I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
#461038 01/23/12 06:57 PM
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AS seems to vary a lot from person to person. I hear people having many symptoms I don't have. I have many symptoms which others don't have as well. It can be hard getting a diagnosis. I was in pain for like 6-7 years before I finally was diagnosed. And the diagnosis was based on all my symptoms and some damage detected by an MRI. If you think you are having joint damage or anything arthritis related, be sure to go to Rheumatologists periodically.. That's the type of doctor that is most likely to be able to make the diagnosis.

#461055 01/23/12 10:59 PM
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after 13 years i was finally dx'ed with undifferentiated spondyloarthropathy.

started with gastritis and IBS when i was 30. added in the upperback / neck spasms and very severe dq tendonitis when i was 35, first one hand, then 2 months later the other hand. two years later it was my SI joint. after that over the years a slew of tendonitises, pulled tendons, torn tendons and ligaments. when i finally saw rheumy #5, he said he thought one reason it took so long for a dx was because i had an extremely severe case of enthesitis (the cause of all my tendon and ligament issues).

and then too because of the flares and being better between the flares so if doctors were looking at a data point when i was doing well, they may not have appreciated how badly i was doing at other times. though i now have doctors that don't need to see to believe, they just believe me when i tell them my history.

the reason i bring all this up is because you mention your tendon symptoms. they are due to enthesitis (unless you have EDS and are hypermobile (i'm not. have you been checked out for that? though if your father has AS......) which is a classic spondy symptom.

my tendons and ligaments were horrible! i needed a cortisone injection at the dq tendon and months of PT on both hands just to be functional again. i tore a ligament in my left ulnar wrist. needed a cortisone injection and months of PT and 2-3 years of not using the hand just to be functional again. tore my rotator cuff; more PT, no swimming for something like 6 months or more. tore my bicep tendon; that healed pretty quickly with lots of ice. very bad hamstring tendonitis where they attach behind the knees; 6 weeks of staying off my feet and icing almost all day for a month, then ice and heat and stretching the next two weeks. tore where the IT/TFL bands attach to the trochanter; could barely walk for about 5 months, couldn't exercise for a year, more PT. lots of ultrasound too. and all of this by simple daily use or swimming or walking or stretching.

but, have not torn a tendon or ligament since sept 2009. and even my tendonitises are much more mild and much less often. the reason? started LDN (low dose naltrexone) sept 2009. if i had been able to get a dx and treatment like a biologic back then, probably would have gone that route. but since i couldn't, i was able to get a doctor to prescribe the LDN.

years before LDN, zanaflex (which is a muscle relaxant) actually gave my tendons a bit of relief, except for when i flared and then tore things. i imagine it was because the muscles weren't pulling so much on the tendons. while it was the tendon inflammation (at the entheses) causing the muscles to spasm in response, treating the muscles as well helps in the other direction. hence why my rheumy also has me on magnesium and CoQ.

i still flare, so still need something more. but between the LDN and a few supplements the rheumy has me on (vit C, vit D, Ca, Mg, CoQ, probiotics) doing much better between the flares.

i'd think with your father's history that should help you.

my ESR and CRP have never been above 10 when tested. of course i never get tested at my worst because i'm usually too bad to leave the house then. but still i bet they still wouldn't be that high. that's typical for spondys.

and my scans (xrays, CT scans, MRIs of my spine and SI) have shown a little arthritic changes, bone spurs but nothing overly dramatic (yet). doctors were making me wait til they saw something more, til i found rheumy #5.

between the enthesitis, flares, gastritis and inflammation in my illeum, dry eyes, and periodic skin rashes, and family history of "inflammatory arthritis", this was more than enough for rheumy #5 and my current rheumy to dx me with and treat me for undiff spondy.

in the meantime, maybe see if you can find not only a rheumatologist but a good manual PT. and wonder if some of the supplements i mentioned could help your tendons? but for me, i do think the biggest help to my tendons is the LDN.

and yes, morning stiffness and fatigue are also classic "inflammatory arthritis" symptoms.

Last edited by Sue22; 01/23/12 11:00 PM.


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)
#461061 01/24/12 12:58 AM
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Even if I knew nothing about AS, it would seem Doc should be barking up the AS tree long before resigning himself or herself to assume FM.

YOur question is, can AS cause all the symptoms you mention. YES.




L-R: Julianna, Jamie, Diane and Tonimarie

stevec-they also serve who stand and wait
#461064 01/24/12 03:34 AM
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Hi Blueforest, welcome to kickas

I do hope you have access to a good reputable Rheumy to do all you testing and diagnostics. Talk to people here, ask questions, write down things you would like to talk about with that Rheumy. Be proactive, don't take FM as a diagnosis if you are sure it's the wrong one. Research and take all your questions with you, written down, when you see your Rheumy.

Cindy


" That which does not kill me only makes me stronger"

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