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#277786 - 04/19/17 09:01 AM New here! and a Question
Nicole_B Offline
Registered Visitor

Registered: 04/14/17
Posts: 48
Loc: New England, USA
Hi there! I'm new here. I haven't been diagnosed with any arthritis, spinal or otherwise, but I've been wondering if there is more going on with me than my doctors have found so far, and one of the things that has seemed like it could fit has been spondylitis. So I guess I'm wondering if anyone out there has had any similar experiences? Iíll try to keep it brief.

Over the past five years, I've had various soft-tissue injuries crop up that have been diagnosed (if I saw the doctor for them -- not all of them were serious enough to) as tendonitis or over-use injuries (hip, then plantar fascia I think, then tendonitis in wrists, then knee, then shoulder). These have all seemed to turn into either nagging or recurrent injuries, although I did physical therapy on my hip going on five years ago that didn't seem to help much (even though I continued the exercises for quite a while). I've also had back pain starting very gradually in my upper back for at least that long, though I didn't really think much of it until around two and a half years ago, rib pain since two and a half years ago, and lower back pain that became more consistent and painful only a couple months ago, but that has been present for a while before then (again, gradual onset made it hard to pinpoint). I have been seeing a chiropractor regularly for two and a half years, since the rib pain started, and been actively trying to strengthen my back and core for the past ten months as well as making my workstation more ergonomic.

I finally decided maybe more was going on and saw my doctor about the back pain (catalyst being when it was really affecting my sleep for a period). Ended up seeing a spinal specialist who gave me a prescription NSAID that definitely helped (my symptoms plus that made him say it's inflammatory back pain) and ordered a lumbar MRI. The MRI found a bulging disc which he said is causing the inflammation (he didnít clarify whether inflammation was showing on the scan as well or not), and sent me to physical therapy, saying to come back in six weeks if it hasn't helped (when I asked about my upper back/ribs, he said the PT would help with my whole back). But I'm not sure how that explains everything else ó Iím sure PT probably would help with just about anything that could be going on, but I also want to know what is going on to make sure Iím doing everything I can. I've also noticed a few times over at least the last year when I've had a period where I felt like I had a low grade fever -- achy and tired -- and my back hurt worse, lasting probably a few days. My back also seems worse when I'm sick. Iíve also had mild gastrointestinal issues for the past two ish years, but I also changed my diet (went vegan, although very gradually) around that time so Iíve tended to attribute it to that. Iíve been attributing all of these to isolated issues for a long time ó maybe I have muscle imbalances, mild viruses, diet changes, etc. ó but Iím starting to wonder if theyíre not isolated.

I guess I'm not sure if I'm crazy for thinking more could be going on. I'm an active and otherwise healthy woman in my mid-twenties and I'm in good shape (well within normal BMI, exercise regularly, etc.). Could the bulging disc have just been a coincidence? I'm not sure how much to advocate for myself before I start getting labeled a hypochondriac. And although I know that I know my body best, I also keep doubting myself because theyíre the medical professionals.

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#277791 - 04/19/17 01:28 PM Re: New here! and a Question [Re: Nicole_B]
Sheep1 Offline
Registered Visitor

Registered: 08/12/15
Posts: 210
Nicole B- I suggest you see a rheumatologist.

I spent over 20 years going to chiropractors, osteopathic physicians, orthopedic surgeons, and other doctors to find out why my back hurt so much. I also have had plantar fascitis and other tendonitis in parts of my body over and over. I've had probably a total of about 10 years of physical therapy.

I was finally diagnosed with spondyloarthritis in 2015, my first back symptoms started in about 1989.

Women with spondyloarthrtis can be hard to diagnose- mine started in my neck in my early 20's, then went to my thoracic spine, and then finally the hallmark SI-joints in my lower back. You are very young, and if I had seen a rhuematologist at your age, I could have avoided years of pain and loss of quality of life.

I have even been to supposedly one of the "best" orthopedic surgeons in San Francisco, who said my spine hurt due to bulging disks and mild scoliosis. I've been on lots of different drugs over the years. Physical therapy has been of minimal help. Imagine my surprise after starting Humira (one of the drugs used for spondyloarthritis) and having that spine pain nearly disappear, spine pain I've had for over 20 years. I had to give up lap swimming 10 years ago because it hurt my neck and shoulders too much because of the repetative motions. I'm now back to swimming over a mile two to three times a week.

Rheumatologists diagnose a wide variety of diseases, and if you don't have spondyloarthritis or another rheumatological condition, I bet that a rheumatologist could point you to what would be the best type of doctor to see for your pain.

And PS: x-rays and MRI's of my spine show a mess of things- multiple buldging disks, dessicated disks, deterioration of my facet joints, mild scoliosis, loss of loridosis in my neck, etc. These were always blamed for my spine pain, but since I got a proper diagnosis and on the right treatment, I've realized these findings on imaging really have very little to do with my spine pain. I do sometimes have a dull "aching" in my throacic area in the back where the ribs attach, and that is "normal" osteoarthritis, but I now can tell that is a different pain than the inflammatory arthritis.


Edited by Sheep1 (04/19/17 01:34 PM)
_________________________
48 yo female, history of back pain since 1985, fatigue since 2009
-USpA diagnosis in August, 2015. Changed to PsA in 2016
-Erosions in finger joints
-HLA-B27 +
-Other: fibromyalgia dx in 2011 (wrong dx), endometriosis, severe pollen allergies
-Medications: Humira (since Oct, 2015). Weekly Humira start in Sept., 2016. Methotrexate (Dec. 2016). Aleve (as needed only), Lyrica, Tramadol, Baclofen, Vicoden, Tylenol, Xanax. Vitamin D, Vitamin B12, Folic Acid. Allergy Immunotherapy shots since 2009

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#277801 - 04/20/17 04:23 PM Re: New here! and a Question [Re: Sheep1]
Nicole_B Offline
Registered Visitor

Registered: 04/14/17
Posts: 48
Loc: New England, USA
Thanks for the reply! I will definitely look into that. I wasn't really sure if some kind of disc issues could co-occur with other problems, so it is reassuring to hear that. Who knows what will end up being the culprit, but it is good to know I can feel confident that there is a possibility this might not be the only answer.

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#277802 - 04/20/17 04:46 PM Re: New here! and a Question [Re: Nicole_B]
Winston Offline
Registered Visitor

Registered: 06/30/16
Posts: 213
First, stop seeing the chiropractor, at least until you get a firm diagnosis. If you do have AS, chiropractic adjustments are very strongly not recommended as they can do permanent damage. At the very least, the chiropractor needs to know that AS or a related disease is suspected.

Second, see your GP for a referral to a rheumatologist. Why the GP first? You'll likely get in faster, and the GP can go ahead and order the bloodwork that the rheumatologist will need to make a diagnosis. Chronic back pain is definitely not normal in a young person. My GP once told me that she automatically orders an autoimmune panel (tests for rheumatoid factor, which points to rheumatoid arthritis; ANA, which points to lupus; and the HLA-B27 genetic test, which points to AS or psoriatic arthritis) in any young person who complains of back pain lasting more than 6 weeks that is not obviously linked to trauma. The fact that yours persists after NSAID treatment and physical therapy, gets worse when you're sick, and came on gradually points to autoimmunity.

Third, was the spinal specialist you saw an orthopedist? My experience with orthopedists is that they know next to nothing about autoimmune/autoinflammatory back pain. So I would definitely seek a second opinion from a rheumatologist on that "bulging disc is causing your inflammation" diagnosis. And just fyi: Just about everyone gets a bulging disc at some point in their lives, and my orthopedist spinal specialist once told me that a mildly bulging disc or discs is actually a normal finding in any active person over the age of 40. I know you're not that old, but my point is that the bulging disc might be a red herring.

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#277803 - 04/20/17 07:12 PM Re: New here! and a Question [Re: Nicole_B]
Banana Online
Registered Visitor

Registered: 07/23/06
Posts: 6477
Loc: New York
Yes, stop seeing the chiroprator, second see another doctor or if you think you can talk the doctor, get into it more. A short burst of steriods can prove the inflammation. How did your hips look on MRI?


Are you worse is the morning? Stiff + pain?

Does it get better as your exercise?

Mine started with all kinds of bursitis's, hips and shoulders.

Did they do tests for inflammation and the gene for AS?

Anna
_________________________
Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.

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#277808 - 04/21/17 09:12 AM Re: New here! and a Question [Re: Nicole_B]
Nicole_B Offline
Registered Visitor

Registered: 04/14/17
Posts: 48
Loc: New England, USA
Thanks for the responses and advice!

The spinal specialist I saw was an "Interventional Spine Physiatrist" -- he does physical medicine/rehab and pain management, and the diagnosis of painful spine conditions. Not sure if that falls under orthopedist or not. From what I can gather, a bulging disc can cause local inflammation occasionally. I understand on the one hand the doctor being conservative and assuming it's a simpler thing first, but on the other hand it didn't feel like he was considering the whole picture.

To be fair, I have not yet finished this round of PT that is specifically for my back, but I am feeling a bit frustrated because we are working on strengthening muscles that I have been working on strengthening (albeit without a trained physical therapist guiding me) for several months.

I'm not sure how my hips looked on MRI. I didn't see the report, only that there was a bulging disc. Not sure if any inflammation showed anywhere, not even sure my hips were necessarily visible on the scan?

Pain is better with exercise/activity, worse in the morning and I do tend to feel stiff, although I think consistent stiffness that I actually took notice of has been more recent (last couple months ish), but I think I am best in the middle of the day and tend to feel worse again by the end of the day (although differently -- I think I tend to feel stiffer in the morning and more generally achey and tired in the evening). However, I do work at a desk most of the time, and although I have been trying to move around more in whatever ways I can (and I usually notice a difference the days I am more active), there's only so much I can do. I'm also often quite tired by the end of the day. The doc did say it seemed inflammatory, so I imagine it fits at least most of the symptoms of inflammatory back pain.

They have not done tests for inflammation or the gene for AS, and I've only ever had my lumbar spine imaged on MRI this time, no previous imaging on any injuries etc. I've never been diagnosed with bursitis -- they've said IT band injury (which I think is notoriously difficult to treat?), tendonitis, or they've just been over-use injuries. I am definitely active enough for that to be true. The area around my iliac crest and right at the SI joint also hurt, but that's been more recent (last couple of months that it started being consistent). The rib pain I have actually sounds like I think it could be chest wall enthesitis, does anyone else have that? This is actually possibly what feels the stiffest in the morning and was the original reason my sleep began being disturbed over two years ago. However, I had a cough a couple of weeks ago that aggravated the whole area which has made it hard to remember what my "normal" state on that is.

Do most of you tend to fluctuate, with some sort of 'baseline' state?
_________________________
Mid-20's. Undiagnosed upper and low back/SI pain (along with hips & ribs consistently, and neck, knees, heel/bottom of foot, ankles/achilles, and wrists periodically). Diclofenac 75mg 2x/day and Prilosec 40mg 1x/day. PCOS recently diagnosed.

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#277812 - 04/21/17 01:42 PM Re: New here! and a Question [Re: Nicole_B]
Tacitus Offline
Registered Visitor

Registered: 06/06/03
Posts: 2893
Loc: Reno/San Fernando LU PI
Hello, Nicole_B:

The answer to Your question is that there are no coincidences.

If You really injure a body part enough to develop some arthritis and especially at Your age--You will KNOW absolutely when it was injured. In other words we don't do exercises or play sports or do fun activities and injure ourselves without knowing it: Feet, wrists, knee, shoulder--impossible to over-use into disease state at age twenty-something!

Incredible You have not yet been tested for HLA B-27, ESR, and CRP.

All the inflammatory issues and then digestive problems, too? VERY indicative of AS.

VEGAN diet is absolutely the worst diet for AS. I know this from actually being vegetarian 22+ years and vegan for 2 of those years before discovering the cause of my AS was dietary starch. Carol Sinclair's "The IBS Low-Starch Diet" has the best description of the mechanism that causes AS and following up on this information has kept me in remission for the previous 17 years.

You are young enough to avoid what I have been through and had to learn and re-learn the hardest ways possible.

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


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#277822 - 04/23/17 05:05 AM Re: New here! and a Question [Re: Nicole_B]
Nicole_B Offline
Registered Visitor

Registered: 04/14/17
Posts: 48
Loc: New England, USA
Thank you for the advice Tacitus! I will definitely look into the diet thing.

As for the soft-tissue injuries, they have all begun while I was consistently exercising in some way that could cause such an injury, and some of them were a relatively sudden onset, but they did not happen in a particular moment - they were a little while after or morning after activity. For example, IT band injuries are pretty common in distance runners, which I was at the time my hip became a problem (the thing that has made me wonder about that is that it's still a problem five years later after physical therapy). My knee, though, did seem to originally kind of just happen, but also was not bad, and my hip was already a problem so it didn't seem unreasonable. (Both my knees, though one worse than the other, got really unhappy for a couple months after a multi day backpacking trip with multiple steep ascents and descents, but my knees have bugged me a little on descents for a few years I think.) The tendinitis in my wrists, though, I think seems like it is probably just from typing (it's becoming more common younger now because we spend so much time at computers) -- it kept recurring but making my workstation more ergonomic and getting an ergonomic keyboard has seemed to keep it at bay (hasn't affected the other pains though).

It seems possible or even likely to me that some of these injuries are just that - injuries. It's only when I've looked at the whole picture that I've started to wonder if they all are.
_________________________
Mid-20's. Undiagnosed upper and low back/SI pain (along with hips & ribs consistently, and neck, knees, heel/bottom of foot, ankles/achilles, and wrists periodically). Diclofenac 75mg 2x/day and Prilosec 40mg 1x/day. PCOS recently diagnosed.

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#277906 - 05/04/17 01:23 PM Re: New here! and a Question [Re: Nicole_B]
Nicole_B Offline
Registered Visitor

Registered: 04/14/17
Posts: 48
Loc: New England, USA
CRP, ESR, ANA, RF, and Lyme all negative. I don't think they tested for HLA-B27, but I don't have any family history (that I know of) of AS or related diseases (psoriasis, IBD). I have made an appointment with a rheumatologist though.
_________________________
Mid-20's. Undiagnosed upper and low back/SI pain (along with hips & ribs consistently, and neck, knees, heel/bottom of foot, ankles/achilles, and wrists periodically). Diclofenac 75mg 2x/day and Prilosec 40mg 1x/day. PCOS recently diagnosed.

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#277919 - 05/07/17 05:47 PM Re: New here! and a Question [Re: Nicole_B]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1735
Loc: MS
Keep in mind that you can be HLA-B27 negative and still have SpA. And many spondies do not have elevated CRP or ESP due to the nature of our inflammation.

When do you see the rheumatologist? Let us know what he/she says.
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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