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Does this sound like AS? #281715
10/10/18 12:17 AM
10/10/18 12:17 AM
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tdbates Offline OP
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Hey everyone! I am a 39 year old female, homeschooling mother of twin girls. I was diagnosed with sciatica about 5 years ago and then Fibromyalgia 2 years ago, after various tests came back negative, but I don't believe I have either of those. I also tested positive for SIBO two years ago and I've been living with IBS since I was a child. I went to a rheumatologist about a year and a half ago based on my symptoms and he suspected AS but I tested negative for HLA-B27 and my ex-rays at the time were non conclusive.

My symptoms are dull, aching pain in my lower back, hips, buttocks and legs. Sometimes it's just my thighs, other times it radiates down my calf and into the tops of my feet. I get a really bad pain just below my knees, where the chin bone meets the knee. I have always been active but the past few years have lost a lot of flexibility due to my hips; everything just feels stiff. Sitting is the worst. Laying down is uncomfortable without my heating pad and the pain will wake me up many nights. It's worst in the mornings and a few hours after a workout but not during the workout itself. I go through periods without much pain, but then they flare up and I hobble around. I also deal with vitamin deficiencies and fatigue (which I assume are due to the SIBO). My chronic pain is usually lower body only; not upper. I do get eye burning but I was told its dry eyes as there is no redness involved.

I've learned to suck it up and just live with the pain but last month it started to affect the back of my heel. I thought it may be tendonitis, but it feels like the pain is on the bone itself, or where the bone meets the achilles tendon. This kind of came on out of nowhere and doesn't seem to want to go away and it's driving me nuts. It really hurts. And now the bottoms of both of my feet ache almost like they are bruised. I had let the AS theory go but in my research about my achilles it came up again.

I guess I'm just seeking opinions. I'm not sure if I should try an orthopedic doctor or go to another rheumatologist. It seems like many of my symptoms line up with AS but of course they line up with a few other things as well. As I said above, I'm pretty active and work out at least 5 days a week. I'm not sure if this could potentially be AS or if its some kind of disc issue or what and I'm making myself crazy with the internet researching. Trying to decide the best course of action because making the appointments, going to said appointments, scheduling tests and awaiting results all take a lot of time.

Thanks for reading!

Tracy

Re: Does this sound like AS? [Re: tdbates] #281716
10/10/18 01:13 AM
10/10/18 01:13 AM
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Joshua Tree, CA
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Hi Tracy. So sorry to hear of you discomfort and frustration. I would stay stick with rhuematolgists due to your varied symptoms. Not all AS are HLA b27+ and a rhuematolgist would understand this. Have you had any xrays or an mri? Takes 10 yrs to show the impact of AS on xrays which is why MRIs are often used. I was active in the 80s when first dx with reiters syndrome - before they realized woman also got AS. My early rhuematolgist advice was to stay active - so enjoy your workouts but be kind to those joints :-). On another level, nutrient deficiencies can occur with celiac or gluten intolerance. Your gi symptoms as well. Have you been (genetically) tested. Recommend this. Good luck!


California, USA
Reoccurring Bilateral Uveitis Dx 1985
Reiters Syndrome Dx 1985
AS Dx 2015
SI joint fused
Re: Does this sound like AS? [Re: tdbates] #281717
10/10/18 02:13 AM
10/10/18 02:13 AM
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Whidbey Island WA
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WhiteCell Offline
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When did you last see the Rheum and what is your city?


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Does this sound like AS? [Re: tdbates] #281720
10/10/18 02:25 AM
10/10/18 02:25 AM
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tdbates Offline OP
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Thank you for the responses.

I last visited the rheumy about a year and a half ago. I live in Charlotte, NC.

I've been tested for celiac (both with a blood test and endoscopy). I try to refrain from eating gluten. I also steer clear of dairy and most grains and legumes and sugars as they all lead to more GI distress.

I've also been tested for RA, lupus, MS, thyroid, and Lyme by my functional medicine dr.

Re: Does this sound like AS? [Re: tdbates] #281722
10/10/18 03:00 AM
10/10/18 03:00 AM
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I would suggest you go back to the rheumatologist, or see a new one if you were not happy with the one you saw before.

With your new heel symptom, they might want to do an MRI, which could help in either ruling in or ruling out an AS/spondyloarthritis diagnosis.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Does this sound like AS? [Re: tdbates] #281724
10/10/18 04:33 AM
10/10/18 04:33 AM
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Los Angeles, CA
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I hope you find answers soon. It must be tough not knowing. How can you treat and feel better if you don’t know what’s going on.

I don’t know what SIBO is?

Agree with others regarding MRI with a radiologist that knows how to evaluate for spondyloarthritis. Unfortunately that is something we can’t take for granted.

Several things you mentioned are very familiar and related to AS. Age, chronic insidious buttock, low back, hip, and heel pain, plus IBS. But I wouldn’t know about differential diagnosis- there could be other reasons for the way you feel.

Couple thoughts - if rheum doesn’t know what it is, then I’d ask about AS again. But push for MRI since X-ray is useless unless permanent damage has already occurred.

Also, look up Uveitis . If those symptoms sound familiar, then go see an Opthalmologist. Tell them your symptoms including back issues and suspicion of AS. It takes them 5 minutes to look at your eye in a slit scope. They even if not an active flare, my doc says they can see past damage from Uveitis.

On the SAA community page above are links to seminars and webinars. Including a seminar by optholmologist, dr Lee and mri webinar by dr Maksymowych.

There is also a spondyloarthritis referral rheumatologist directory if you want a second opinion.

Finally, the white board animation might be helpful; it’s on the ‘could I have Spondylitis page”

Best wishes & please let me know how it turns out.


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Does this sound like AS? [Re: tdbates] #281730
10/10/18 01:09 PM
10/10/18 01:09 PM
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tdbates Offline OP
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Thank you all so very much.

SIBO = small intestine bacterial overgrowth. It leads to a whole host of fun! Basically I'm bloated 24/7 in addition to fatigue, deficiencies, food intolerance, rashes etc.

I will go ahead and see my GP to get a referral to a different rheumatologist and request an MRI instead of just an x-ray. Not knowing what is wrong is awful and I start to feel like a hypochondriac, questioning if it's all in my head!

Tracy

Re: Does this sound like AS? [Re: tdbates] #281731
10/10/18 02:30 PM
10/10/18 02:30 PM
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A rheumatologist can do almost everything an orthopedist can do except surgery. They can order imaging. They can order physical therapy. They can prescribe all the medications that orthopedists can prescribe plus the DMARDs and biologics. So, no, don't see an orthopedist unless/until a rheumatologist confirms that your troubles are mechanical rather than inflammatory.

Re: Does this sound like AS? [Re: tdbates] #281732
10/10/18 04:52 PM
10/10/18 04:52 PM
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Reno/San Fernando LU PI
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Tacitus Offline
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Hello, Tracy:

Regret that Your symptoms are very indicative of AS, including Sicca (dry eye issues). Diverse areas of involvement is very telling.
Up to 30% of the serological tests for HLA B27 are false negative; the test is unreliable. Fc and ELISA methods are accurate.
SIBO will exacerbate AS, and it is important to eliminate this to help reduce disease activity.
You did not mention disease "flare-ups" or morning stiffness, which are the hallmarks of AS but the presentation in women is much more varied.
Also, whether NSAIDs have helped (these can be dangerous, long-term but can help for temporary relief).
Prolonged fasting (5-6 days) helped me take down the worst flares and can be not only indicative of AS, but will cement the food connection with this condition.

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: Does this sound like AS? [Re: tdbates] #281733
10/10/18 05:46 PM
10/10/18 05:46 PM
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Hi Tracy,

I developed Irritable Bowel Syndrome after a particularly severe flare about 6 years ago. It wasn't so bad at first but has gotten worse, even with a restricted diet - gluten free, no processed foods, no omega 6 oils, only occasional dairy. We finally decided to try nortriptyline and I does seem to help quite a bit. It was prescribed by my GI doctor. It also seems to help control some of the SpA pain.


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